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)

[BBBee]

I am so sorry this has happened to you. I cannot offer anything apart from to say I hope if I was in the place of one of your friends I would not act in this way and I hope you meet up with some nicer people soon.

[CarGirl]

for you, having friends is so important. The wheelchair service is absolutely terrible I know what they offered my friend as "suitable" was a joke.

hugs x

[LadyVictoriaOfCake]

shiney, i wish you lived near me. because you would be very welcome round at my house. i think SGK and persoanl clown will say how child friendly my place is. it gets pretty hectic here during the summer. i gate off the kitchen and my room is a no-go for the kids, but everywhere else is open. i have laminate everyqwhere so dont worry about spills, spare pots of paint (no wallpaper), anything breakable is out of dd2 reach, let alone any other child. i really dont worry about things. possessions can be replaced.

it can be very isolating have a persoanl with disabilities in the family, i know. we did feel very isolated at times.

[NAB3]

Can I ask what SN your son has and where you are? I would have you all around my house.

[Blu]

ShinyhappyBoogaloo - I know nothing of anything of this...but I do remember JimJams posting about her world becoming smaller as her DS grew.

Can you be upfront with your friends? You tell them when you would like to be invited...offere them the option of one of you taking your DD - If that is an option you would like to be offered.

And definitely have another go at them about the straps - how can it be safe for your DS if he can climb out?

I would invite you. I really would. And I'm sorry you have all this to deal with.

[chonky]

I would invite you too shiny.

Are there many other families with kids with SN near to you? They might be able to understand a bit more what it's like (plus their houses may be better equipped to deal with mini demolition squads).

[theheadgirl]

Shiny, I wondered about the issue of straps for a larger child. My DD3 has a major buggy at the moment, not because she can't walk, but because she sometimes WON'T. Also as she gets bigger, I really need it for containment. She would run away, trash things in shops, and be generally disruptive unless in her pram. She is also 7, but smaller than the average NT child of that age. What did the wheelchair service say to you? Is the idea of restraint that is an issue? I know I had to sign a form for DD3's school to use a chair with a seat belt on it. But without it, she would be disruptive and even worse dangerous if they're cooking or whatever.
Sorry to change the tack of your thread, which I know is about the challenges of maintaining friendships with a child who has "difficult" SN. I am certainly aware of how hard it is to visit people with DD3, but am lucky in that most socialising is done with my very supportive family. As a lone parent I couldn't otherwise manage.

[CarGirl]

I remember the time when my friends dd - aged 14ish had a major toddler stye tantrum in a shop and trashed it - my friend was so mortified, I suspect it's a much more common problem than I ever realised (or thought about tbh)

[PeachyFleshCrawlingWithBugs]

I can empathise, we lost almost all our friends as ds1 grew, even my sisters never invite us around-a ctually ds1 tends to be quite well behaved with other people, but he did completely trash one house we were in (kicked in a walL!) and that's why, ds3 isn't exactly easy either.

Like you, we have a child who is NT and he is aprticualrly sociable, and I am wella ware that his world is a lot less than it should be- because we can't risk having anyone back here. We've tried at intervals and never been able to find a way to calm ds1 enough about the intrusion to make it a worthwhile and risk free experience (DS1 can be unpredictbale one minute he's fine, next all hell has broken loose.

We ahve one friend who we are still close to, although she lives a distance away- her ds1 is dyslexic and boisterous so she ahs some idea, another whose home we can visit but never comes here- and her family situation is such that we don't go often (terrible marriage withs oem violence).

MIL won't have any contact with us after ds1 bounced on her sofa (FFS!), although FIL is good; my aprents are gems thankfuly!

It's sad, but what can anyone do? like you I am grateful we have each other, I dread to think what woudl happen if I lost DH as I actually went several months without a face to face coversation with anyone over the summer . I was starting to lose it at that point!

[PinguKiller]

Shiny, I know how you feel

I am on my own with ds4 (7yrs) no family within walking distance and no friends. I don't take DS to visit anyone as ha is not 'house broken'

I am suffering from severe depression, which doesn't help him. The friends that I had, have all disappeared over the last 5 years, which co-incides with son's diagnosis

On the outside, looking in....

The only reason I exist is to care for son, I am no longer a person, but *'s carer.

[Katymac]

Sorry I have no idea how to address the issue with visiting people

But could remap help with the strap issue?

I think the website is here they design stuff that is needed so they might be able to help...maybe?

[ShinyHappyPurpleSeveredHeads]

Thanks you guys. Just talking about it makes it more bearable.

Thank you for posting for me Booga (what techie abilities have you got that the rest of us haven't? )

Got to go and pick DS1 up from work now but will be back. Please carry on posting. Those who said you would have us at yours.. you're are all so nice but to be honest DS is so horrid that I can't in all honestly blame anyone for not wanting us round.

[Boogalooblue]

I can assure you I have no techie abilities, just sympathy for the way you have been treated.

I hope you find some answers.

I am sure you will find loads of support here

[PeachyFleshCrawlingWithBugs]

Shiny, the feeling of he is horrid- it does pass. I felt very down about ds1 for a long time, DH was even considering boarding for him as it did seem we ahd a very strained relationship- its taken time but now we are very close and have rebuilt our relationship based on what and who he is. The very fact that he isn't going to get friends, invitations etc has become a bond between us and against the outside world, iykwim?

[noonar]

sorry if i'm being naiive or unhelpful with this suggestion, but could you broach the subject with your friends about missing their company, and suggest meeting out somewhere, like a park or woodland area, so that you can spend time together and keep the house tidy? i often do this with friends, to avoid the house getting trashed.

[ShinyHappyPurpleSeveredHeads]

Peachy, know exactly what you mean. That is what I was getting at in the OP.. it's a sort of "us against the world" kind of feeling.. and it does help.. but other times I just bloody well miss being a normal family.. and feel sad and angry for what might have been. We learnt to cope with all his physical and medical needs.. and then the behaviour came along and that's a whole other kettle of fish. And it feels endless.

I too have found myself "looking forward" to the day when maybe he'll go to a residential college, eg in his late teens.. but that's wishing another ten years of all our lives away! AND I feel guilty for thinking that way.

Noonar we do that in the summer quite a lot. But as the winter draws in it makes everything seem so much worse

[Blossomhill]

Have you ever considered that ds may have adhd shiney? Just that my dd was a little bit like your ds and she has adhd.

[PeachyFleshCrawlingWithBugs]

I think being (ar being about to be) a larger family has been a bonus for us, but it isnt one for everyone- at least DS1 is in the centre of a loving group, and indeeed he and ds3 are inseparable.

has your ds2 and dd been to a sibling group of any kind? I know the NAS has some from 8 but ds2 is too young atm.

[ShinyHappyPurpleSeveredHeads]

Blossomhill, yes he has ADHD as one of his long list of secondary diagnoses.. the primary one being unknown, but often termed as either dystonic cerebral palsy or "assymetrical four limb motor disorder" - the latter which his paediatrician is fond of using but does nothing, I think to describe his condition.

He recently had bloods taken for a whole new chromosome work up which he hasn't had done since he was a baby. So who knows, a weird and wonderful syndrome label may result.. but although I used to hanker after a diagnosis, I don't anymore. What's the point? It's highly unlikely to change anything..

A sibling group for DS Peachy? Or did you mean DD? DD does Young Carers activities which she loves, and really deserves because she does loads of "caring" for her brother and puts up with so much. She also swim trains 4 hours a week like her brother. They do lots outside the home. I try to make up for the chaos DS2 causes them at home.

As for DS, I used to worry that he was missing out on things like beavers, swimming club etc, all the things that my others do/have done because of the need for constant one-to-one, but I don't stress over that so much anymore. He would be a nightmare to attempt to control at such things so it's not to much as a lack of provision of a helper now as a lack of ability to harness him hyperactivity/often violent behaviour.

Re the ADHD, he was tried on Ritalin last year.. he went mental (sorry for the description! But he was off the wall.. completely wired!) and came off it the same day. Paeditrican has recently made some noises about trying something else (particularly in view of fact that the melatonin doesn't really work for him to any degree so no positive effect to be gained for either him or us of more sleep) but I am scared. He doesn't seem to respond to many drugs that way people are expected to.

Every day is an ordeal to be got through. He beats the crap out of us most mornings and starts on DD most days after school. And non school days are worse. He wrecks the house. We "control" him by use of dog gates (tall safety gates) so stop him rampaging round the house but he has broken them all in an attempt to bash through them and we are now keeping them shut with combination locks. I can't describe how frustrating it is not to be able to walk through a door way without fiddling around with a combination lock. It sounds a small thing but it is enought to make you want to scream. We live for his bedtime, all of us, when we can all let out a collective sigh of relief and bloody well leave the doors open!

We are not coping v.well at all. I feel almost depressed all the time these days; it's a sort of dead feeling lurking underneath whatever mood I'm in, all the time. Both DH and I are on citalopram for anxiety and this helps but I currently feel more depressed than anxious although I never did before.

This evening I smacked DS. Can't believe I'm admitting that on Mumsnet (must be a first.. nobody else admits it.. probably because they don't do it I suppose!)but I did. I smacked my disabled child. He had just thumped DH around the head for the 5th time and thrown his glasses across the room. Blood was running down the side of DH's face where DS has just knocked the scab off the stratch he did to him yesterday. I slapped both his hands to make him stop. Violence with violence. Great stategy; not. And this is a child who can't walk or stand unaided. But he is as strong as an ox and completely out of control. Don't know why he does it. He was saying "sorry daddy, I be good boy" in same breath as - BANG - another blow hit DH! WHY?! How the bloody bloody hell are we supposed to cope with this forever? I know people are in worse situations, life and death ones for instance, but we are aren't dealing well with this at all. And it's ongoing and neverending and seems to get worse by the month. The social workers thing we are lovely resourceful parents who cope wonderfully. They said so at the recent Child in Need meeting held to discuss DS. We're not and we won't. But because we're not abusing or abandoning him (and obviously won't do that) then they are happy.

You can see why people don't invite us round now can't you and I suppose that ought to be the least of our worries. It's funny how you find some new aspect of a difficult situation to focus on each day.

And all I want to do is talk to other SN parents (via the net, primarily MN! Because that's the only way to do so) because I know they'll understand. Other people just looking pitying.

Sorry for going on and on. In case anyone thinks otherwise, I do spend a considerable amount of time responding to the posts of others all over the different sections. I don't just whinge. But this is a mammoth one isn't it. Am sorry

[yurt1]

I have very few friends who can cope with ds1. He doesn't break stuff (did break a friends mobile phone once- threw it in a stream- but I can't think of anything else) but he requires constant watching because he's at risk of escaping. It's amazng how many people can't cope with that.

We've lost a lot of friends (I really don't have the energy to deal with people who can't cope with him- however reasonable not being able to cope with him is) but the friends we do have are worth 1000 of the ones we lost iyswim.

Ds1 does a lot of physical stuff that he knows he's not meant to do. He's not in control; it becomes compulsive and is very difficult to deal with (believe me we've had the weekend from hell with houseguests & ds1's behaviour).

Much sympathy. 6 months counselling (from someone very experienced with disabilities- specifically ASD- ds1's dx) helped a lot.

[yurt1]

oh and can I ask more about your dog gates. DS1 started to get out of ours- I need new ones but haven't found ones he can't scale. Sorry to hijack.

[ShinyHappyPurpleSeveredHeads]

They are Lindam ones Yurt1. We got them from Argos. They are about £30. We used to have to replace one every few months when they catches on top broke, that was before DS developed his pincer grasp. Now he can use his hands so much better he can just open them! Hence our use of belt, luggage straps and finally combination locks to keep them shut! You should see how we have to strap is bedroom gate shut!! Health and safety regulators would have a fit!!

Katymac thanks for that link. Didn't mean to ignore you. Will check it out now.

[Niecie]

Shiny, can you not get some respite care? Sorry if that sound really naive but surely there has to be some way of getting a breather even if it is only for a night. What has to happen to make this possible?

[yurt1]

oh ds1 can jump over those. I need a tall one. I don't think such a thing exists.

I think you do need to seek out friends who can cope- there are people that can- I could for example (I've had all sorts done to my house by children with learning difficulties for example- I'm not precious about it). Other people in the same situation are the best bet, but I do have friends with no kids with SN who cope admirably.

The other thing I do is always take help (paid for if necessary- we get dps) when visiting people with all the kids- so that ds1 can have 1:1.

[yurt1]

Anwyay am off to bed- ds1 was up from 3am last night (grrrr) so am dead on my feet. Much sympathy though. Would it be worth considering direct payments? I do like thier flexibility. Last time I visited my friend who had the destroyed (by ds1) mobile phone I took my dp's girl. DS2 and ds3 played with friend's kids, dp's girl stuck to ds1 literally shadowing him whilst I sat and had a cup of tea with friend. True respite for everyone.