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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

DD1 told me shes now a "young carer"!!

33 replies

lisad123 · 29/09/2011 10:01

DD1 who has Autism came home last night and told me shes now part of the "young carers" group and gets to do this and that ect.
Now I love the fact she feels important, and seems to be looking forward to the activities. BUT Im not happy the school have done this without discussing it with me at all! I only had a meeting with them 2 weeks ago and no mention of it was said.
I dont think she meets young carers critia, yes she has a younger sibling with Autism and yes her dad has cancer but cant see how she is taking on caring role with either of them.

OP posts:

Pagwatch · 29/09/2011 10:07

What does it entail?
Is it a nice name for a support group for children with family with illness/disability or something else?

Dd gets invited to a siblings group and gets offered young carer information.
She isn't a carer but her life is different from many of her friends and the groups provide a space for her to meet peers dealing with similar things.

I guess what I am saying is that they probably should have told you but are the consequences negative?

Original poster

lisad123 · 29/09/2011 10:10

I dont know what it entails at all, they havent told me anything.
I dont mind, if its helpful to her. I know her friend is going along too, who;s mum also has cancer, but then dd1 couldnt understand why her other friend couldnt come too

OP posts:

Original poster

lisad123 · 29/09/2011 10:17

also would you call the school to discuss??

OP posts:

RogerMelly · 29/09/2011 10:26

she is a young carer though if her sibling has autiosm and her father is ill. It is about more than the day to day care but more about the limiting nature of having someone ill or disabled in your family. It's a great organisation you know, they have great fun. They should have discussed it with you though fior your consent, that goes without saying.

Do you think the family liason officer at the school may have asked her if she wanted to do it and will get in touch and it's just crossed wires?

Original poster

lisad123 · 29/09/2011 10:30

I know its a great thing, having worked with many young carers in the past. The limiting nature is mainly due to her strict "rules" because of her own autism, but know what you mean.
TBH its the first time they have looked at us as a whole family, they normally only ever look at the girls indivially and dh cancer is a sideline issue.

I clled SENCO as I needed to chase something else and told her, she said I should have been told, and will get pastoral care teacher to call me to dicuss.

I think its great for her tbh, but guess was a little surprised

OP posts:

RogerMelly · 29/09/2011 10:45

I think it is fine for you to be suprised as they should have discussed it with you :)

graciousenid · 29/09/2011 11:14

My daughter isn't a carer because her sibling has a disability

I'm horrified at the idea that that assumption could be made tbh.

RogerMelly · 29/09/2011 11:17

have you ever had a sibling who is ill or disabled graciousend? I have and my life was not the same as my peers, infact it was incredibly difficult in comparison but I suppose it depends on the level of disability/illness

horrified is a very emotive word to use about an organisation which provides counselling, days out, interaction with other children who may be going through similar for children who will benefit greatly from it

elliejjtiny · 29/09/2011 11:19

There was a young carers group at my old school. My friend went because her sister had ME. My friend lived with their dad and her sister lived with her mum. She only saw her sister every few weeks or so. I think these kind of groups are for anyone with a sibling or parent who is ill or has special needs.

purplepidjinawoollytangle · 29/09/2011 11:25

DNephew has been classed as a young carer pretty much since birth - his big sister has ASD. It doesn't mean he takes on any responsibility for her (he's 4, she's 6) but it doesn mean that he will hopefully have access to extra provision in the future

He is very sweet and looks out for her when she chews/climbs something dangerous. He's just starting to realise her differences now that he's started School

Original poster

lisad123 · 29/09/2011 11:29

I guess I don't mind her being a young carer because in a way she is. She has her own difficulties but he still has to live with a little sister who is violent aggressive and never sleeps (they share a room). Also while she doesnt do anything to do with dh cancer she still has to deal with the sickness like the rest of us.

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graciousenid · 29/09/2011 11:29

well tbh given that my children are all home educated & have been since birth dd1's childhood is already very different from the vast majority of children. No different from her home educated peers & cousins though - they are all far more family orientated than typical I guess, ime (electively) home educated children are expected to have both more responsibility & more freedom at a younger age than their schooled peers.

I don't debate that it is a valuable organisation but yes I feel horrified (& furious) that an organisation would pathologise my child's childhood in such a way without knowing any more information than there is a family member with a disability. And without discussion with the parents? It's awful.

Pagwatch · 29/09/2011 11:31

Isn't it funny how differently we see this.

My two nt dc are young carers. I never viewed it that way because they just work within the framework of what is our regular family life. It seems perfectly routine to me.

But actually most 8 year olds aren't responsible for calling their mum if their 15 year old sibling needs help. Most teenagers are not very occasionally late for assembly because they have to help get their brother on his school transport.

To me it does not mean they are carers per se. It is simply a recognition of the fact that they may well assist at home in ways that their peers do not.

Lisad123. I would be irritated that they hadn't called me too.

Original poster

lisad123 · 29/09/2011 11:32

Horrified?? seriously? Not like they are suggesting we are neglecting her!
As a parent it's hard to deal with our children's SN without support so why should it be any different for our kids!

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graciousenid · 29/09/2011 11:35

if they are there to support children who experience illness or disability within their family (which is great) why are they called young carers?

I am a carer for my son - he requires far more than typical parenting - my daughter is not, she has no more responsibility for him than I expect her to have for her other siblings.

graciousenid · 29/09/2011 11:38

obviously different families have different experiences of this which is exactly the reason it is inappropriate for a child to be automatically called a carer because a sibling is disabled.

Pagwatch · 29/09/2011 11:43

I understand what you mean graciousenid. But I think horror and outrage rather than annoyance and irritation grate with me a little as it seems to imply that being a young carer is shameful or indicates a lack of parental responsibility.

Your dd does not have anymore responsibility for your son that for her siblings. Great.
The fact that my dd does have to watch her brother does not mean I am not managing, that she is needy or in short that being a young carer would have any negative impact upon her homelike at all.

That may well be different from what you mean but the hyperbole is suggesting negative connotations to the label, surely?

RogerMelly · 29/09/2011 11:45

They are called young carers because the organisation supports a wide range of children who have to help at home more than thir peers, as pagwatch has explained. I don't class my NT children as carers either fwiw but they do have hell of alot of difficulties and a very different life to their peers because of their severely disabled sibling and I would be naive to believe otherwise. I resent the implication that we are not as close a family because my children go to school aswell

I completely agree that lisa123 should of been consulted, it is very wrong she wasn't

RogerMelly · 29/09/2011 11:46

I don't know about you pagwatch but also my older child has had to watch the younger one on many occassions because I am having to deal with my dd with sn, especially when we are out and about

graciousenid · 29/09/2011 12:00

pagwatch my horror is that an outside agency would take it upon themselves to label my child with no discussion with me or her. Yes I feel very angry about that. Not at the thought of her having a caring role.

Things may change - she or any of the other children may take on more responsibility. I might get ill, dh might get ill ... anything could happen & at that point she may well appreciate the support of an organisation such as young carers but it would be me or her approaching them. I am wary of well meaning charitable or statutory organisations who appear uninvited with offers of support.

I fully prepared to accept that some/most/the majority of people feel differently ... but I still feel horrified.

RogerMelly · 29/09/2011 12:02

They don't just take up on themselves as a charity to get involved, she would have been referred to them by the school (usually by the FLO) but I agree with you that lisa123 should have definitely been involved in that process, I think that goes without saying.

graciousenid · 29/09/2011 12:06

Roger it has nothing to do with emotional closeness/bonding whatever but logistics - I have four children at home all the time we spend more time together than we would do if any of them were in school. What could possibly be controversial about saying that?

But yes there does seem to be a mindset difference - from this discussion it appears that both you & Pagwatch feel that an older child keeping an eye on a younger child is unusual (pls correct me if I'm wrong I'm trying to avoid making assumptions/inferring too much) ... I'm just saying that's not unusual in HE-ing families. Whether you think that is appropriate or not is another issue.

RogerMelly · 29/09/2011 12:12

I think it might also depend on the needs of the child/ren as well though. Fior me I have the eldest who has severe and complex learning disabilities, autism, moderate physical deisabilities, challenging behaviour and chronic epilepsy and she is 12yo now, so not much smaller than me, then I have a 10 and a 4 year old, so quite a gap. I do think it is unfair that my 10 year old has to watch the 4 year old. He would have to watch 4yo if I needed to take eldest to the toilet etc, or if she was kicking off in public, having a meltdown etc. It is alot of responsibility for him and it is outside the boundaries of normal, I actually think he is put in abnormal situations and I feel really quite uncomfortable about it.

Original poster

lisad123 · 29/09/2011 12:23

Just had a call from school. They said what happened was they were discussing young carers yesterday is assembly and asked if anyone felt that's they might be a young carer could go and discuss it with pastoral care lady (who dd1 see's alot of anyway). Dd1 took it upon herself to go
And talk to the teacher, which for her is a hard thing to do. She had planned to call me to discuss but dd1 got there first

I'm not at all to admit our life's would be very different if dh didnt have cancer and if both dds didn't have SN but they do. This means we have to do things differently than others and if dd1 see's herself as a young carer, I'm proud. It shows she has great insight into her life and despite the autism can think of others needs.
Shes very excited

OP posts:

Pagwatch · 29/09/2011 12:32

I don't think an older child helping/looking after a younger child is unusual. I also don't think that siblings helping each other and contributing to the smooth running of the family is a concept that exists uniquely within home ed families.
That in itself is a very odd idea.

Of course my eldest son helps both his younger siblings.
Did you miss the bit about the 8 year old having to assist her 15 year old brother? This includes helping him sometimes in front of her friends or in public. Now again I think families are a unit and pitch in.
But her role is slightly unusual and has been since she was quite small. But if someone is going to say 'euuuw, why do you have to help your brother with that' she has occasionally said " I help my mummy care for him" because it is something she is glad to do and proud of. I would imagine 'young carer' would be something she would be happy to be called.

So if someone called her a young carer without my specific say so I would be miffed but i personally would try to step away from nuclear terms that implied offence.

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