siblings

[DorothyL]

So, siblings of sn children, who have to put up with quite a bit due to their sibling's sn - do you expect them to be a supporter of their sn sibling nonetheless or do you accept resentment etc?

shady our referral to camhs was ultimately triggered by dds self-harming. We had been seeing a local teir 2 child psych on the NHS, which I self referred to, as I was convinced dd had autism. They refused to see if for over a year, once she self-harmed, they referred her to cahms, who saw it straight away and she was assesses accordingly and diagnosed with ASD. The family therapy is now one of the recommendations that we have come away with as a result of her diagnosis. I must say I am surprised at the support we are getting. For instance dd1 just attended a sibling support group. However, she didn't like it :-(

Thanks all for the suggestions re: bed. Unfortunately, dd probably also has OCD. She was assessed for it, but at the moment they won't diagnose. The bed is part of the anxiety she experiences. We can't touch her bed, change her bed, put on sheets, duvet. She hoards under, over and on her bed. We need to make one change, her into a new bedroom. What may be likely is me sleeping in the hallway outside her new bedroom for a bit. But we have some drop-in psych support next month, so we are hoping to get guidance (well, I know we won't, but perhaps some people to bounce off our ideas). as always, things are getting more complicatd around christmas - late nights, change in routines, new presents (dd hates surprises). On dd2 suggestion, we've deferred this to new year. She's in the box room, so we were hoping to give her a cabin bed and make the room more sensorial for her, but I think we will need to put her existing bed into the box room. Argh!!! We are also trying to accommodate her hoarding tendencies in a new room. Tricky stuff!

If DD1 has space to store her stuff then it's her own fault if she leaves it around and it gets broken by DD2 or the toddler. That's the same in all families!

shady do look into grants again specifically a Disabled Facilities Grant (DFG). You do need an OT assessment but you should be able to self-refer for this. I think you may also possibly need an assessment from a social worker but again you should be able to self-refer. Check out the Internet for any general DFG advice and also your local council website, although be prepared that there may be nobody who actually knows anything about DFGs so you may have to tell them what's what!
If you can get your GP or paediatrician to refer you or back you up then all the better.
Also keep a diary or incidents or take video evidence if you can to support your case.
One thing to bear in mind is that DFG is only for the person with a disability so they don't care if your other kids are affected you have to show that your DC with the disability needs there own room.

Sometimes when talking with very lovely and understanding friends of nt kids, I'll mention a problem we face and they will say, they know they have that problem too. It's hard, because I want to say, do you really??? Switching a light off can lead to self harm in our house, seeing your 7yo dd try to cut herself with a paper clip is very distressing - just 7yo! Not only is it distressing for me, but also for the siblings.

I guess that is quite a tricky part of it. These issues do happen in all families. And with my 3nt kids, things are dealt with generally swiftly and calmly - as most would do. But we cannot do that with dd. if she needs to rip her favourite book into little pieces because she is dealing with such massive anxiety at school, we have to let her. We would never tolerate that from the 3 nt dcs. In reality it is so hard to live day-to-day with such double standards, but we have no other choice.

When I was a child I used to get cross with my cousin. He had chronic asthma and holidays, days out and parties had to be put off, delayed or cancelled because he would get ill very often. Excitement made it worse. I learned to live with it because I had to.

Time moves on. Both DS's had chronic asthma and history repeated itself.

That's the thing I get from friends/family - why don't you just...? As if it was that simple!

Lots of good posts zzzzz

I don't know if it is actually possible to educate people who don't have first hand knowledge of what it is like to live with an immediate family member with ASD. I didn't used to understand. Even now, when I try to explain why I have to do things in a certain way or what the consequences would be if I didn't, I can hear the words coming out of my mouth and they just don't convey what I mean. I can see people just not getting it. But they don't live with the relentless, crippling anxiety that my child has. I have lost pretty much every friend I have over this.

Mabel it has caused me a lot of loneliness as well, people just don't understand but I'm afraid I withdraw from them

I don't think people understand unless they have to.
Even now when ds has a diagnosis we still get comments that he's "fucked up" and "has issues", and that "apparently" dh and I have decided he has ASD. (As I recall it was a clinical psychologist and a consultant paediatrician who decided that )
You can't argue with that sort of ignorance, so it's easiest to withdraw.
It's hurtful though that they don't even try to understand.

I was brought up with a sibling who was chronically ill and died too young. I never fir one second resented them, despite the fact our parents relationship was tempestuous at best.

I have a child with a severe disability (different) and two other children and I've tried to minimise the effect it has on them by
Sacrificing my own career (I know this upsets people, hut I've made decisions based on all my children and they need me around more -it is a luxury I know)
Making sure the siblings have support at school (both have attended pastoral sessions within school)
Making sure they have support off sibling carers group (and has access to counselling if needed)
I have fought for as much respite as possible so they have time away.

Our life isn't perfect but I doubt anyone's is. We all love one another and get on with it.

Thank God I don't have a friend like 3kings! People do what they need to do. I'm not sure a single mum with limited support and severely disabled child, should be the first port of call for judgement!

Withdrawing, yes. But also neglect. For the first three years of my child's life I couldn't leave her with anyone else and if we had anyone over to the house I would pay the price with weeks of screaming, screaming, screaming. So just stopped seeing people.

Even now, in any social situation I am just managing my child, so end up not speaking to anyone.

Thank God I don't have a friend like 3kings!

So you think it's ok for a sibling to fail exams, struggle socially and be very unhappy just as long as she provides unpaid child care?

Weird.

But no one was talking about that except you. Everyone on this thread seems to understand the effects of a SN sibling on their children and are trying to get help in minimising the impact and trying to strengthen the sibling relationship where possible. I am not sure what you think you were adding by bringing your experiences with your friend on to the thread. It wasn't helpful.
I totally understand this. In particular asking my NT older child to just do something to stop his sister kicking off. And I think this is damaging their relationship but I don't know what else to do.

Stradbroke, just keep communication open. My older ones are teenagers and none of them are resentful. We most probably think more of it ourselves coming from a Neuro typical perspective, but children are adaptable to their situation, so just try an support as you would.

I feel isolated, I try to feel less isolated, so I sort of look at it from their pov too. Sibling/young carers are very active by us though and you don't need ss involvement, but it's worth looking to other local voluntary sector organisations too :)

I'm not fussed by being called weird :o OP I've found a good sense of humour helps too

Is it damaging to include your NT child in their sibling's care though? I intend to split my twins into separate schools, so that the NT twin can have her own school experience without feeling responsible for her sister. But I think it's fair, without relying on her for anything major, to ask her to sing a song or go along with a game. We are, surely, a family, who all take care of each other? Like I've said, mine are still young. But my NT children don't know any different and care for their sister, automatically doing things to keep her on an even keel. My future plan is to keep open lines of communication and to allow any potential resentment to be discussed, not judged and to be dealt with.

This thread has given me food for thought. I think I'm going to sit down with DH and work out a plan on how we can try and work through things better.

This Christmas we have tried to keep things as low key as possible, but it's really not that easy with lots of friends and family nearby. We had a very busy few days, naturally. Both DD1 and DS had a ball and have had no problems adjusting, DD2 woke up a grand total of 21 times on Christmas night. Not just 'mum I'm thirsty' type waking up, but hysterical banshee screaming as she had nightmare after nightmare. I had 2 hours broken sleep that night, and DD1 didn't have much more than that. DH said at 2am that we need to stop taking her out and doing things as this is how it manifests itself. Even when we put her to bed we both said 'she's not going to sleep tonight, she's going to blow'. But why should we stop going out and doing things the other 2 DC enjoy. This is where I struggle to get the balance right. Gone off on a tangent there .

But anyway, I think everyone has to do what is right for their family, only you know what works and what doesn't. Although we are all sailing on the same ship, each of our circumstances is different and don't think we should judge each other for doing things differently.

Today I had yet another story about my nephew being so charming to my mum's friend... Love those when all I can hope for for my ds is pity, if not condemnation

Shady you could be me - we try to do things "normally" and then it all falls to sh@!

We end up going no where - declining invites to bbqs and party's and days out - because it's easier than the alternative

Sometimes, rarely, once in a blue moon, we have a good day ... And think "wow this is most people's every day"

And those people who aren't living this day in day out don't help by saying "oh just leave him to it - he's only doing it because your here" or "you need to be firmer" or my personal favorite "it's because you spend too much / not enough time with him" - can go jump off a cliff

I have a DC with profound SN which affect every part of family life. I also have a younger NT DC.

I would say definitely yes, allow your DD that resentment.

I think one of the most effective techniques to try is to allow your daughter all of her negative feelings. Let her tell you about the resentment that boils up, the jealousy, the dislike and the anger. Acknowledge that those are her feelings. By this I mean make sympathetic noises, nod your head, say 'Yes, I see that it really, really bothers you' etc etc. Or ask her to write a letter describing how she feels. Acknowledge that things are at times hard for her.

Do not show that these feelings upset or anger you. Allow her to air them. You don't have to agree with them (though with some you may want to). But don't come up with the explanations as to why your DS does a particular thing and why it's not his fault. It's not the time for that. Besides which she will have already heard a lot about that.

Let her tell you the feelings, give her an outlet for them. You don't have to agree with them and you don't have to accept her treating your DS badly. But let her know that her negative feelings are natural and allowed. All feelings are allowed, though all actions are not.

It's basically using the techniques in How To Talk So Children Will Listen And Listen So Children Will Talk'.

I think she will actually start to feel less resentful of how things are if you acknowledge those negative emotions first and foremost and keep on doing it.

I also think it's powerful to acknowledge how important she is in your family. How it's just as important to you that you are there for her too, not just her brother. That her needs and desires matter too.

I am not saying you have to take action and do everything differently at all, in fact this technique does not involve action as such. Besides, I have no doubt you are doing a fantastic job in v difficult circumstances.

I do think a good dose of sympathetic non-judgemental listening is amazingly powerful - it's bloody hard at first because it's very difficult to listen to negative emotions being conveyed and you so want to defend your other DC. But sympathetic listening and an acknowledgement that it's difficult for her too, could go a long way to making your DD feel less resentful. If she feels less resentful, she will act less resentful which means things will improve.