My 7yo old daughter avoiding her 5yo AS bro at lunchtime

[Gail66]

It's truncated my sub-heading it should say "she said it's coz peeps laugh at him and she doesn't want them to laugh at her"

 

When she told me about this situation my first reaction was that I felt a bit ashamed of her attitude but then I thought this was a bit harsh coz she is only 7.

He is very demanding and most people find him too much sometimes - me, my other half, my parents who often have him at the weekends - so it's obvious that his sister can feel like this too.

He was only diagnosed 4/5 weeks ago and the paediatrician said that we might not want to make him aware of it until he's a bit older but I think that we need to say something so that his sister understands more and can be more caring for him at school.

He is a bit of a comedian so I assume that's why other kids laugh at him. It doesn't bother him at all so I don't really see this as an issue.

I don't want to lay too much responsibility on my daughter either but they only see each other in the dining room - they play on different playgrounds coz she is KS2 and he is KS1 so they don't see each other at break times. It would just mean her letting him sit near her when they're eating if he wants to - she told my mum that sometimes she moves table to avoid him which is what I didn't like really.

Any advice about this situation would be really appreciated

Edited November 18, 2010 by Gail66

[baddad]

Hi Gail -

I think you're absolutely right not to come down too hard on your daughter for the reasons you've stated, and also because it's often quite natural for siblings to have different networks in school. Having said that, though, there's a difference between avoiding spending time with your brother because you don't always get on or because he winds you up, and avoiding him because you are 'ashamed' or fear negative judgements 'by association'. Do the other kids laugh 'at him', or do they laugh because he's funny and they like him? It may not be an important distinction for your son at this stage but if the former it undoubtedly will be in the future, and for your daughter it would seem a very relevant consideration right now. If it is 'laughing at' him, then he really is going to need support from his sister, and while I have every sympathy for siblings the reality is that a member of her immediate family is disabled, and that it's something she is going to have to come to terms with. I don't think it's ever to early to start teaching that lesson, or to instill in her the moral belief (and expectation) that he should not be marginalised or victimised because of prejudices about his disability. If such marginalisation is accepted and condoned within his own family because of 'embarrassment', it really does beg the bigger question of how we can expect wider society not to negatively judge. Difficult concepts for a seven year old to grasp, certainly, but not impossible, and if you go about it in the right way not issues that she needs to feel railroaded or guilt-tripped about either. Some social stories that allow her to see things from his and your point of view would certainly help, as could a 'sibling group' where she meets other kids in similar situations so she feels less isolated. If you can find some shared activities outside of school time - especially if you can include her other school friends in them too (as part of the group - not as an alternative to the group) that would probably help too.

 

Finally, I think you need to be talking to your son too. AS and 'a bit of a handful' often go hand in glove, but they are not one and the same thing (though they will be, if allowed to be). He needs to understand that his sister is choosing not to sit with him because of his behaviour, and that to what ever extent he can, he has as much responsibility for keeping their relationship as mutually agreeable as possible. As you've said, it's unfair to expect your daughter to make all the compromises, and that applies whether she's seven, seventeen or seventy (and if anyone's going to be around to look after your son when he's seventy, your daughter's likely to have a major role in providing that network). He also needs to know, if people are laughing at rather than with him, the kinds of behaviours that are causing those judgements. If they are behaviours he cannot help or avoid etc then he needs to learn how interpret and cope with negative judgments (i.e. to see that they say more about the person judging than they do about him), and if they are behaviours that he can help or avoid then it is in his own interests (and often entirely reasonable if he wants to be socially accepted) to not enact them. The fact that you, your partner, your M&D, along with, to a degree, the school and your daughter can adapt to accommodate the behaviours is not going to help in the long-term, something that many children with AS are sadly not finding out until it is far too late.

 

Hope that's helpful

 

L&P

 

BD

 

Oh PS: Just wanted to add... IMO the paediatrician is wrong about 'waiting'. I don't think you need to sit down and tell him, or to try to explain his behaviour in the context of AS (particularly if it provides a 'loophole' for him to use to wriggle out of personal responsibility), but I do think he will be a happier child if he's allowed to just naturally grow in to the idea that he is a bit different than if he is suddenly confronted with it in a 'sit down we need a serious talk' kind of way at some crisis point further down the road. If you think about it, there are few disabilities where that would be an option, and in situations outside of disability - i.e. ethnicity or something like adoption - few where the option would exist, or where it would be seen as appropriate or beneficial if it did exist.

Edited November 18, 2010 by baddad

[Mumble]

If your 5 year old did not have AS (or any other difficulty) how would you react if your 7 year old didn't want to sit with him at lunch but wanted to be with her own friends / class mates?

 

It may be more helpful to your 5 year old if he doesn't sit with his sister but does have to socialise or at least sit with his own peer group.

 

I grew up with my older brother who has severe Autism. When you're with them all the time at home and all the emphasis is on them and their difficulties, any respite where you can be yourself and be noticed for who you are rather than through your brother is so important. Your daughter needs time to develop as herself and so I would suggest encouraging this at school and allowing her to eat separately.

 

Of course, alongside this, you probably need to have an open discussion with her about her brother so she can better understand the situation, but I think it's probably a positive that she's expressing these feelings rather than keeping them to herself.

[justine1]

Hi

I have been in this situation with my boys. Last year my eldest son age 10 was constantly asked by the school to "help" with his AS brother (age 7) it often meant he didnt have the chance to socialise. My eldest often said that people kept asking him "whats wrong with your brother" and "your brother is weird" he didnt let this bother him, however in the end I did complain to the school because it was most definatley not fair on my 10year old.

 

As Mumble mentioned, my 10yr old already does sooooooo much at home, as I am a single mother he often has more responsibility than his friends.I feel school is his chance to socialise and "get a break" in a way.Luckily they are now at different schools anyway.

 

I think its perfectly normal for siblings not to want to hang out at school anyway,more so if they are different genders,my brothers avoided me like the plague when we were younger.If its about him socialising etc I think the school need to sort this out not you or your daughter, so definatley speak to the school.

[lizj]

Hi,

When my two boys were at the same school, I made it very clear that the elder "normal" boy must not be saddled with the responsibility of the younger ASD boy. Teachers looked to him to sort out problems, and he was gradually becoming his unpaid teaching assistant at breaks and lunchtimes, and then they started getting him out of class to deal with him.

I felt this was totally unacceptable, and told both school and the eldest that his education and social life was not to be ruined by his brother's disability.

Your daughter is at an age when fitting in and being just the same as the others is very important, and no matter how much she loves her brother, she will probably find his behaviour embarrassing.

I think our "normal" children have enough to put up with at home, in holidays and at weekends, and that they deserve a chance to live their own lives and have their own friends when they are in school.

[Gail66]

I was going to explain his condition to them by trying to find a book that he could read or I could read to them (my daughter can't read so is being assessed for dyslexia and still needs to be read to) and telling them to ask any questions they had about it and if we didn't have an answer then we would find out for them.

I was going to wait to see if she did have dyslexia though so that I could tell them about both things at the same time and neither of them felt left out if you see what I mean.

 

After your posts I now understand that I need to talk to my son about this too.

I don't think he wants to sit with her all the time and this is the only chance they get to see each other during school time.

As I mentioned before they spend both break times and their playtime during the lunch hour on seperate playgrounds and they definitely don't use her to "help" with him otherwise she would tell us

 

I have a meeting with the headteacher tomorrow so I will ask about other kids laughing at or with him. I genuinely believe it's with him though coz he thinks he's a comedian and loves programs like You've Been Framed, Harry Hill's TV Burp, The Simpsons, Bear Behaving Badly, Little Howard's Big Question which all involve joke telling or slapstick or both.

 

Also thanks for all the replies it has been a big help <'>

[Karen A]

The NAS offer a help 2 course on sibling issues.I have not done it but the other 'help 2' courses I have donw were excellent.It might be worth finding out if there is one in your area.There are also some good books about AS for siblings.

 

We have Ben who is 12 and J who is nearly 15.They have always been at the same school.

 

At primary school the school were rather too keen to use J in supporting his brother.J is very supportive but he was effectively being used as a TA.

He already has to cope with extra stresses at home.Ben can be very loud and tends to try to take over the x box and TV at times.He also says things to Js friends that are a bit embarrassing which is difficult when J is trying to appear to be a cool 15 year old.J really needs his own space.

 

 

 

So since the lads started at secondary school we have made it clear that at school they have their own lives.I drive Ben to school although J could take Ben on the bus because I do not want J to have to have the responsibility.Fortunately the school is split site which also helps.Many of the teachers have been surprised to find the lads are brothers.

 

It might be worth investigating whether your daughter might be avoiding her brother at lunch time because of subtle pressure from other individuals.Whilst it is helpful for your daughter to be supportive, if your son is being laughed at rather than others laughing with him then that is an issue that school should pick up.It would be unfair to expect a 7 year old to take responsibilty for educating the other pupils in the school about her brother's disability.She could well end up being marginalised along with him.

 

Karen.

Edited November 18, 2010 by Karen A

[Karen A]

There have been a few threads about books about AS for both children and their siblings.

I will search out some links for you.

 

http://www.asd-forum.org.uk/forum/Index.php?/topic/25111-good-book-for-explaining-autism-to-8-yr-old/page__p__294492__hl__books__fromsearch__1#entry294492

This thread might be useful and there are other liks on it too .

Edited November 18, 2010 by Karen A

[chris54]

There were a lot of us kids so for most of my school days there would have been 2 or 3 of us at the same school. Apart from the older one having the job of taking the young ones to and from school, I cant really remember seeing much of my siblings at school at all.

Edited November 18, 2010 by chris54

[Sally44]

The same type of things happened with me and my son and older daughter. There are a few things you can do, some have already been suggested, so sorry for repeating:-

 

Find out why others are laughing at your son. Is he funny or are they laughing at him. I suspect the latter because your daughter does not want to be associated with her brother. If he was just 'funny' then she probably would like it to be known that he was her brother. Mostly my own son has had a good response from alot of children. But he has had his fair share of bad experiences including a boy pushing him and shouting "get lost weirdo" and that happened in the playground infront of me!!

 

Your daughter is going to have conflicting feelings and you just need to acknowledge that and talk to her and give her some ways to counter act what she sees or hears in school. If she has difficulties with literacy she will already be having her own self esteem problems and maybe desperately trying to "fit in" and appear like everyone else.

 

I found a parent support group where the kids played in a gym (with all the PE equipment out). They were supervised, and the group was for the children with ASD, their siblings and friends. That give my daughter the opportunity of meeting other children who also had siblings on the spectrum. It is not easy. I myself have an older sister with learning difficulties and she went to a special school. I was bullied and picked on for some time by the kids at my own school who had never even seen my sister, but who knew that she went to a special school. "Mong" and "Spaz" were the favourite playground words and when you are so young yourself you are not equipped emotionally or verbally to deal with that.

 

For your son during playtime does he have any TA supervision or support. Have school got dinnertime clubs. Do they use things like Circle of Friends etc to help him get a social network? These are things to talk with the SENCO and EP about.

 

I waited until my daugher was about 9 before I talked to her, and when I did she got very tearful and it all came out and I discovered what had been going on for her in school and how she was feeling. Kids in general want to fit in and be the same as everyone else. And kids are very good at picking out the kids that are different. Now I allow my daugher to have her time with her friends. But I also ensure that sometimes he is allowed to join in. My son cannot be allowed to manipulate every situation, but he also cannot be excluded all the time either.

 

I also pointed out to both my son and daughter other children who had differences and siblings. My daughter has a number of friends whose siblings are also different in some way, or who have needs. It is important to know that your own family is actually quite "normal" in that every family has their own problems and difficulties. There is no "perfect" family.

 

Feeling ashamed or embarrassed depends on what her sibling is doing. I have felt both myself. I have stood in the shop whilst my sister wet herself. My sister lives and works independently. But on this occasion I had offered to buy her an ice cream and she chose to come with me rather than say she needed the loo. She was not at all embarassed about what she had done. She could not control it and that incident did lead us to the GP and we did get it sorted to some extent. But that's another story. But many people that I knew where in the shop when it happened. Now I am older I don't feel like I did as a child. But these things are still not easy.

 

The more it is out in the open and discussed and easier it is to deal with.

Edited November 19, 2010 by Sally44

[Mumble]

A really nice book to read with either or both your children is "Different Croaks for Different Folks".

[bid]

I think the situation for siblings is very, very difficult.

 

As parents it's a very hard thing to get the balance right for them between tolerance and acceptance with taking on too much of a burden of care and concern.

 

My eldest DD ended up having counselling with CAMHS as her brother's behaviour at the time had reduced her to a little girl of 9 who sat and literally wrung her hands with anxiety, stopped eating enough and started to bite her nails to the quick.

 

She is now a young woman of whom I am very proud, who wants to work in special needs, and volunteers at a special needs playscheme. But I do worry that she has adopted the caring model that apparently many siblings do.

 

I think your DD needs to feel she can talk about all her feelings about her brother, however conflicting or uncomfortable they may be. She needs to know it's OK to feel embarassed or resentful or jealous sometimes...she may worry that such feelings make her 'bad', but they don't, they are completely normal feelings and it is better for her to feel she can verbalise them, IMO.

 

Hope you can find some books that can help you all <'>

 

Bid

[Karen A]

 

She is now a young woman of whom I am very proud, who wants to work in special needs, and volunteers at a special needs playscheme. But I do worry that she has adopted the caring model that apparently many siblings do.

 

 

Bid

 

Hi.I wanted to add the bids point about siblings who adopt a caring role which continues into adult life is supported by solid research evidence over many years.Research into those who are young carers of siblings or parents where the individual has various health needs consistently shows that young carers can go on to adopt a caring role which is not helpful to long term mental health.

The young carer may well turn out to be empathetic and supportive of those with health needs.However they may also learn that their needs should always come second to others and that they should not rate their own difficulties as highly as others.

 

J has always been very supportive of his brother.However at one point his brother became so demanding and controlling that if CAMHS had not been supporting us J would have had no freedom at home at all.J needed our support in advocating for him in not having to accept verbal abuse and physical aggression.

 

Research reported yesterday acknowledged the large numbers of young carers who go unrecognised with little support in school.I think it was reported as one in twelve pupils in secondary schools.

 

Karen.

[bid]

If your 5 year old did not have AS (or any other difficulty) how would you react if your 7 year old didn't want to sit with him at lunch but wanted to be with her own friends / class mates?

 

 

I've been mulling over this thread, and I think Mumble has made an extremely important point here.

 

I've got 4 of 'em, and I think it's important to focus on how you would expect any of your children to treat their siblings, regardless of whether thay have any kind of disability. There should be expected and acceptable behaviour within the family, regardless of how various sibs feel about each other at any given time. My girlies can either love each other or hate each other, but either way they know certain behaviour is not on.

 

I do think that there is enormous and sadly largely unavoidable pressure on sibs of children with special needs and personally I have tried to play down the disability angle as much as possible...I've tried to make it about how siblings should treat each other, not how the non-ASD sibs should treat their ASD brother, if that makes any sense?

 

It's so difficult to balance the needs of all your children, even before you add a disability to the mix...

 

Bid

Edited November 20, 2010 by bid

[Sally44]

I also agree that Mumble makes a good point.

The difficulty begins to arise when the child with additional needs is either struggling in school or is not being fully accepted or integrated or maybe being bullied. The sibling will feel both anxious and embarassed whilst also knowing and wanting to do something to support their sibling. This is not a good place for a child to be placed in repeatedly.

 

Regarding the 'caring role' of siblings. That happens both within the home and is also perpetuated within school. For myself, school knowing that I had a SEN sister meant that I was always paired with the child who had some kind of difficulty. As a sibling you do get targetted by bullies and that can be exacerbated by being paired with other children that also tend to get picked on because you then feel 'responsible' to stick up for them etc etc.

 

I had a very difficult time in school and basically did not go much from the age of 14 onwards. Fortunately I did manage to get back into school and sit exams. But I feel that being a sibling of an SEN child (and other things obviously) contributed tremendously to how I am today.

 

I think in a family it should always be that the family members support eachother. However the individuals within the family need to follow their own lives and 'help or support' from that perspective. I suppose this kind of thing has always happened ie. the daughter staying at home, unmarried to look after the parents in their old age. I have an aunt who hardly ever went to school and who was expected to stay with the parents into their old age. She rebelled and married a very unsuitable man just to get out of the house. These difficulties and the 'roles' that people take on have been going on for centuries.

[bid]

Sally, your post just reminded me of when I went on a school French exchange when I was 14.

 

Because my dad trained social workers for adults with learning difficulties, I was paired with the French girl who had a little brother with special needs.

 

It didn't worry me at all, and at the time I think I felt 'special' in some way, but it's another example of where youngsters who have some kind of familial link with special needs are automatically assumed to be able to cope with this kind of role.

 

Bid

Edited November 21, 2010 by bid

[Mumble]

Regarding the 'caring role' of siblings. That happens both within the home and is also perpetuated within school. For myself, school knowing that I had a SEN sister meant that I was always paired with the child who had some kind of difficulty. As a sibling you do get targeted by bullies and that can be exacerbated by being paired with other children that also tend to get picked on because you then feel 'responsible' to stick up for them etc etc.

 

I had a very difficult time in school and basically did not go much from the age of 14 onwards. Fortunately I did manage to get back into school and sit exams. But I feel that being a sibling of an SEN child (and other things obviously) contributed tremendously to how I am today.

I do feel that a lot lot more needs to be done for siblings and to help professionals such as teachers recognise the impact of having a sibling with SEN.

 

I'm in the interesting position that I'm a sibling to my brother who has severe disabilities, but I'm also the disabled sibling to my NT sister. Recently I've been really worried about the effect of growing up with my brother and I on my sister, she's said a few things that make me realise there's a lot more going on in her head than she talks about and although she makes a joke of her role by tripping me up and claiming to be a terrible carer if she's ever labelled as my carer I'm sure it's getting to her in part.

 

I remember being terribly bullied at school. This was for lots of reasons but at my first secondary school some of the children knew about my brother and used this as a reason to bully me. I grew up, both as a result of what happened in school and also my Mum's rather old fashioned labelling of my brother as handicapped and her not talking about him, feeling ashamed of having him as a brother. In my second secondary school and even now sometimes (and I feel ashamed to admit this) when people ask if I have any brothers and sisters I'll often reply yes, I've got a sister and will then talk a lot about her. I don't say I don't have a brother, I just don't volunteer that information. If he is mentioned I find it really difficult to deal with others' uncomfortableness following the inevitable 'where does he live?' or 'what does he do?' questions.

 

No-one (in a professional capacity) has ever asked me how I feel about my brother, my experiences of growing up with him, or my fears now. At school, whilst the teachers were aware I had a disabled brother this and the impact of living with him never seemed to be a consideration. If I turned up at school bruised and battered if he'd been violent the night before, the teachers seemed far more concerned that I hadn't done my homework. If I was tired and finding it difficult to concentrate in class, that was put down to me and I should have gone to bed earlier or not stayed up and watched TV. They just assumed I must have been up watching TV, it didn't occur to them that I was up because my brother had been destroying the house until 3am.

 

In some ways, siblings of SEN children actually need more time away from them than NT siblings need from each other in order to develop their own identities, and they need space and time to think about the issues they're faced with. I watched Children in Need a few nights ago, and I thought, as I do every year, that some of the stories, charities and schemes they show are fantastic, but in reality how many siblings of SEN children actually have access, and consistent long-term access, to supportive schemes, how many siblings of SEN are even known to the authorities?

[bid]

Brilliant, thought-provoking post Mumble!

 

I always get very angry when young carers are 'celebrated' in things like 'young achiever of the year' or whatever. Why is it being celebrated that children are having this role put upon them?? As a society we should hang our heads in shame and ensure that they don't ever have to be a young carer, not give them some award at a glittering evening, then promptly push them back into their over-burdened life!

 

We are in the very fortunate position that now that my son is an adult it's clear that he will be able to live independently, but when he was little I did worry about what might happen when we were gone if he did need care or advocacy. Again, as a parent, I felt very strongly that this role should not automatically be placed on his sibs. I wanted all my children to have the very best life they could have, not be burdened by expectations that they would look after their brother.

 

Bid

Edited November 21, 2010 by bid

[Karen A]

I do feel that a lot lot more needs to be done for siblings and to help professionals such as teachers recognise the impact of having a sibling with SEN.

 

I'm in the interesting position that I'm a sibling to my brother who has severe disabilities, but I'm also the disabled sibling to my NT sister. Recently I've been really worried about the effect of growing up with my brother and I on my sister, she's said a few things that make me realise there's a lot more going on in her head than she talks about and although she makes a joke of her role by tripping me up and claiming to be a terrible carer if she's ever labelled as my carer I'm sure it's getting to her in part.

 

I remember being terribly bullied at school. This was for lots of reasons but at my first secondary school some of the children knew about my brother and used this as a reason to bully me. I grew up, both as a result of what happened in school and also my Mum's rather old fashioned labelling of my brother as handicapped and her not talking about him, feeling ashamed of having him as a brother. In my second secondary school and even now sometimes (and I feel ashamed to admit this) when people ask if I have any brothers and sisters I'll often reply yes, I've got a sister and will then talk a lot about her. I don't say I don't have a brother, I just don't volunteer that information. If he is mentioned I find it really difficult to deal with others' uncomfortableness following the inevitable 'where does he live?' or 'what does he do?' questions.

 

No-one (in a professional capacity) has ever asked me how I feel about my brother, my experiences of growing up with him, or my fears now. At school, whilst the teachers were aware I had a disabled brother this and the impact of living with him never seemed to be a consideration. If I turned up at school bruised and battered if he'd been violent the night before, the teachers seemed far more concerned that I hadn't done my homework. If I was tired and finding it difficult to concentrate in class, that was put down to me and I should have gone to bed earlier or not stayed up and watched TV. They just assumed I must have been up watching TV, it didn't occur to them that I was up because my brother had been destroying the house until 3am.

 

In some ways, siblings of SEN children actually need more time away from them than NT siblings need from each other in order to develop their own identities, and they need space and time to think about the issues they're faced with. I watched Children in Need a few nights ago, and I thought, as I do every year, that some of the stories, charities and schemes they show are fantastic, but in reality how many siblings of SEN children actually have access, and consistent long-term access, to supportive schemes, how many siblings of SEN are even known to the authorities?

 

http://www.google.com/hostednews/ukpress/article/ALeqM5isr1uXwsHIfb-WMxSh8JZovLXz8g?docId=N0088591289882273683A

I found a link to the research that I mentioned previously which is only five days old.

It does support your suggestion that young carers are seriously under accounted for in record kept by LAs.

My lads both go to the same school and yet staff do not make a link that J is sibling to Ben and therefore a carer.

[Mumble]

I absolutely agree about those young achiever type things. Is anyone questioning why they're having to be a young achiever or aware of the situations children are in? I had to crack and run away before anyone acknowledged the pressure a caring role was putting on me; by then the damage has been done, not only to the child but to their relationships with those they are caring for.

 

I wanted all my children to have the very best life they could have, not be burdened by expectations that they would look after their brother.

I think the issue may be that in some cases, solutions are applied too symplistically, but in reality family relations are never that simple. I don't get on well with my Mum, we hardly talk about my brother, and I've never really had an opportunity to develop a relationship with him. I doubt the extent to which, when I'm not physically with him, he even realises my existence. My Mum has never put any pressure on my or any expectation that I will look after him in any way and he will always need specialist 24 hour care. But that pressure doesn't need to be there. It comes from within. I do worry about what will happen to him as he gets older, I do worry about whether he's happy and his needs are being met. I do feel that there's an assumption that because he's in care, I don't have to care, but these are very different applications of the same word.

[bid]

I do feel that there's an assumption that because he's in care, I don't have to care, but these are very different applications of the same word.

Very good point <'>

 

Bid

[JsMum]

Firstly I have to say that the replies are really fantastic and it has made me think about the Opening post because as a kid I was brought up to stand up for my siblings no matter what, so I kind of understand now from the posts that making a sibling be responsible for your sibling has relly made me think.

 

I totally agree that there shouldnt be the need for children carers if families could access the right services and provisions in the first place, then children wouldnt be placed in such situations where they are caring for a sibling or family member.

 

I would therfore fight to ensure that your son has access to the right support at lunchtimes and playtimes and that he is gicen support in the provisions Sally has suggested such as circle time.

 

Also agree that there should be some form of sibling special/additional needs councilling offered on the NHS to look at feelings of siblings, I have recieved excellent services from Relate and they offer councilling to fanilies so I recommend that you research your local relate service.

 

Also agree too that you need to look into ensuring your daughter is also accessing support/provisions for her reading difficulties also as I can imagine a playground is going to be a place all her frustrations will be pouring into so she will already be dealing with many feeling already.

 

I think that your daughter is probably struggling herself, then witnesses her brothers struggle too and it becomes overwhelming for her and so I am thinking is this another reason she is avioding her brother also.

 

I think that both of your children need more support at school and I would try and arrange a meeting with the senco to address some of the difficulties and see if there is additional support your children can access.

 

JsMum

[Sally44]

Sally, your post just reminded me of when I went on a school French exchange when I was 14.

 

Because my dad trained social workers for adults with learning difficulties, I was paired with the French girl who had a little brother with special needs.

 

It didn't worry me at all, and at the time I think I felt 'special' in some way, but it's another example of where youngsters who have some kind of familial link with special needs are automatically assumed to be able to cope with this kind of role.

 

Bid

 

I know!! And the same thing has happened time and time again with my daughter. In some ways I am happier now that my children are at separate schools.

[Sally44]

Yes the pressure is always there. Even, as Mumble says, if you are not the carer 24/7.

I am still involved to a certain extent with my sister because I have to deal with all her benefits and correspondence because she cannot. She has had a couple of instances where her employer seemed to be attempting to release her, and I had to step in there.

I've had to get medical issues sorted out and in some cases have even had to fight against my own sister refusing the help she should have because she 'preferred' me to do it!!

I've got another sibling with mental health problems and an aging mother.

Sometimes when I just think about the future I get anxious.

When my dad was alive I was not really involved because I thought my father was receiving what he should do. Then my mum told me that the OT was going to discharge him. So I became involved again and it turned out he was not getting access to anything. He died about 4 months later.

My sister has had carers going in to help her for years. Yet they did not notice that her fridge freezer was so iced up that the door did not shut.

So even when you are not the carer, you actually are still project managing to a degree.

 

So, back to the OP, your child will already feel these pressures on her. And she already has her own difficulties. But I think it is a good thing that you will be working on these things now rather than leaving them to build up over years.

 

Places like SS do run 'sibling clubs'. My daughter did not want to go. She said "are they meeting just because they have brothers or sisters with problems?" This seemed to make her more aware of her 'difference' when all she wants is to fit in. So I have tried to make it very clear that she has her time on her own and with her friends and her brother is not allowed to manipulate it or interrupt it. At those times I will do something with him so he leaves her alone. But at other times I specifically state that she has to let him join in and/or help or support him.

 

The only thing I can imagine that makes things different now, is that years ago families tended to live close to each other. That closeness meant that everyone could do a bit. Nowadays we all live miles away from eachother and that means that usually one person is ultimately responsible 24/7.

 

I have recently bought up the question of whether 'we' as the larger family should buy a big house, or 2/3 houses close to eachother. And I am thinking of the benefit of that for my parent/siblings as well as for my children. I would expect us all to help eachother. Those that are being cared for can also be carers too.