Supporting Siblings of children with special needs

[Minxygal]

I thought I'd share with you this letter that I've just posted to my LEA.

It's a subject that I feel very strongly about and I'm hoping that there will be some way of making sure our NT kids are offered support.

 

 

 

To whom it may concern,

As a mother of three, two of whom have special needs it has always been of concern to me that many schools are unaware of whether the children in their care have siblings with special needs.

I can use my own experiences as an example. My daughter Gemma is an extremely bright and articulate youngster. She was always in the top few percent for achievement in any school she attended. No one ever asked about home circumstances and Gemma has always found it very difficult talking about her brothers and their disabilities. Of course being so bright an awful lot of pressure was put on Gemma to achieve and achieve she did, but of course being such a high achiever meant that school put an extraordinary amount of pressure on her to succeed, this pressure along with the pressure of living in a household that can often be described as volitile at one point became too much for my daughter and she attempted to take her own life.

Thankfully this was a few years ago now and we had enough of a shock to put steps into place to make sure that she has a lot more support, but when I made contact with the school the first thing they said was that they had no idea that Gemma's brothers had special needs. Now I have to say the school was excellent and gave Gemma opportunities to study at school and also she was offered counselling, but if we hadn't have brought this to their attention they wouldn't have had any idea that she was struggling to cope with the pressures of home and school.

For children who have to live with siblings and often parents with special needs there is often an enormous amount of pressure on their shoulders before they even get to school in the morning. Often living with siblings with special needs means they are kept awake during the night. Many of them feel compelled to assist in the care of their brothers and sisters and all too many of them are so aware of the stresses and strains their parents face on a daily basis that they feel unable to add to that burden by going to their parents when they have a problem or need help. Add to this pressure the expectations tied around SAT's examinations and GCSE's and you can imagine the difficulties some children have just staying in school let alone succeeding.

 

I think schools could help children in this situation in a number of ways. Firstly by adding a question to the bottom of the child information sheets that are sent out by most schools they could identify children that may need extra support. I would suggest a simple YES/NO option. I have spoken to some schools that have said that they have an 'any other information' section on the form that they would expect this sort of information to be include on. My problem with this is that many children, especially those approaching puberty, are very sensitive around their siblings diagnosis's and often insist that their parents don't include this sort of information. Also for parents it's really important that we don't take the focus away from our children and adding information about brothers and sisters on forms can sometimes add to our children's feelings of insecurity, after all many of them are struggling to find their place in a family they feel is geared to support their siblings.

I would hope that schools would then contact parents for any extra information rather than discuss this with the child, who as I have said might find it a sensitive subject.

 

Offering each child a point of contact if there is a problem would also be really helpful. As I have said before, many children feel unable to talk to their parents when they need help for fear of being a burden. If the child had someone at school identified as a point of contact then they would at least have someone they could turn to in an emergency or when they have a problem.

 

Of course I am not suggesting that these children are given a free ride through school. What I am asking you to see is that these children may not find it easy to find somewhere quiet to study and they may need a little extra support. What helped for Gemma was to be offered somewhere quiet after school where she could do some study in peace and quiet, something she found it very difficult to find at home.

 

Schools put a lot of pressure on children to succeed, for some kids added to the pressures they face at home this can be too much. We need to support these kids as in my experience they grow to be wonderful adults as they learn lessons in sacrifice and commitment at such early ages it's hard for us to imagine.

 

I manage a website for parents of children with special needs and we have real concerns about our children as many of them seem to face problems like depression and anxiety. We're asking for your help.

 

 

Yours sincerely

 

 

Mandy Haxby.

[Mother in Need]

Nice letter Minxygal!

Siblings are indeed overlooked in so many ways, life is so hard for them and schools often don't recognise this.

My eldest was threatened by his AS brother with a knife, twice, and though I passed on the info to the SENCO, it turned out that my eldest's head of year hadn't been informed. If this had happened outside of the house by a stranger it would have been in the newspapers and everyone would have said 'poor boy, what a trauma to go through'.

This same event led to my youngest being terrified/hysterical to leaving me alone with his AS brother, desperately afraid for my safety . Having to explain to his teacher what had happened and why he wouldn't let go of me was not an easy thing to do (even though living in a smallish village half the lot hears AS son scream all the time anyway).

I don't think either son has had any extra consideration since...

[oracle]

Hi Mandy

 

I do not know if we are the only Authority that does this but 'Young Carers' are identified by schools, who also have a Governor trained to help 'Young Carers', as well as a named Teacher? Your daughter is just that a carer and as such this would be kept on record within the school. It's far from perfect but child identified as a Young Carer is patched up with our Carers Centre and the outings and activites, including holidays, are the made available to them.

 

Carole

[Kathryn]

I think this is a very good thread as we talk about our other NT children so little.

 

Mine is 8 years younger than his sister and we are so proud of the way he has coped with the trauma of her breakdown, meltdowns and muteness this year, as well as considerably less attention from us. He is patient in the face of great provocation, manages to remain calm in the midst of uproar, is very caring of his sister and is mature way beyond his 8 years. As her interests match his own he treats her in a very matter of fact way, which is good for her. His life is vastly different from his peers because of his sister and the job he does as carer and playmate will never be recognised officially.

 

I do worry about the long term effects on him though but I'm not really sure what there is to support him where we are: there's little enough support for his sister.

[Minxygal]

Wow Carole,

 

Sounds like your LEA are getting this right. We have nothing like that here, no way of identifying these kids so no way of offering them an escape or somewhere to find a little piece and quiet. We were lucky in the fact that Gemma didn't take enough medication to kill herself although we know that her intention was to make it all go away.

 

Even scarier was the fact that when the hospital found the stuff in her bloodstream they waited 6 weeks before letting us know. This was done during a routine out patients appointment with a Dr who told me what she'd taken. He then told me it was my job to find out why shehad done it and that was it, no follow up appointment, no nothing. No assessment, no offer of help, even though they knew the families curcumstances. THEY DIDNT EVEN ALERT THE SOCIAL WORKER, even though I supplied them with his name and phone number. We were just left to cope, as usual.

 

I know I should have put in a complaint, but things were so up in the air that I just left it.

 

What bugs me though, is they left it 6 weeks to tell me, we didn't know it was an overdose for 6 weeks, we thought she'd had a fit or something. If she meant to die she could have finished it in 6 weeks and we'd have never known to do something about it.

[barefoot wend]

Minxygal

 

Well done for highlighting an area that is very close to my heart.

 

I get so fed up when my other children are picked up on really piddly things by schools who know the situation at home. Occasionally you find someone who understands and goes the extra mile to talk to them and this is much appreciated.

 

Our children grow up so quickly.

 

Barefoot

[helenl53]

Hi Minxy - I am glad you shared this letter with us.

 

My son has now left home but I do remember the difficulties.

 

Recently, he has had a few problems and has gone to his Nan as he felt that I had enough on my plate. Although he is 22, he is still my baby and still needs mum to sort things out - more to make him feel loved, I think.

 

We can never underestimate the pressure our kids are under and your letter has given me a bit of a jolt. Maybe it is something that our support group needs to talk about.

 

Thanks

 

HelenL

[Mother in Need]

My carers support worker asked specifically for sibling support, and was told that there was only support for young carers, which very clearly did NOT include sibling carers.

[oracle]

My carers support worker asked specifically for sibling support, and was told that there was only support for young carers, which very clearly did NOT include sibling carers.

 

But that is the whole point of having Young Cares groups. It does not matter whom they are caring for they are caring. Can I ask was this through a Cares Centre?

 

I would also like to add that as far as I know, and I am going to check this out, having a Governor designated as a Carer Governor was a directive from the DFES. There are many positions on a Governing Board which are now manditory. If this is the case I will let you all know and then you can start lobbying your schools

 

Carole

[LKS]

Minxy what a moving letter. Your daughter sounds wonderful. It is so easy to forget your NT children, and I always feel guilty because my other 2 make so few demands on me. I think my sons school work has suffered, and I have not helped him as much as he needed. He never wanted his school to know the problems we have at home, he believed that most of the teachers wouldn't have given a t**s anyway.

[Minxygal]

I would also like to add that as far as I know, and I am going to check this out, having a Governor designated as a Carer Governor was a directive from the DFES. There are many positions on a Governing Board which are now manditory. If this is the case I will let you all know and then you can start lobbying your schools 

 

Carole

 

 

That would be excellent news if its true.

 

Over the years I have developed selective hearing, it helps me cope with the constant onslaught from my youngest son who has the tendancy to talk at me, not to me. I didn't realise that although this helped me with James, it meant tthat often I didn't listen to what Gemma was saying to me sometimes, until she pointed it out.

[Mother in Need]

But that is the whole point of having Young Cares groups. It does not matter whom they are caring for they are caring. Can I ask was this through a Cares Centre?

 

Carole, as far as I know it was THE one and only young carers group in the county that had been asked. Apparently they are so overstretched that they can ONLY help children who are the main carer, and siblings are hence 'excluded'.

[Zemanski]

Dot is so like your son, Kathryn, she is there for Com all the time.

When he's under stress he bullies her and she takes it without a word I try to notice and support and protect her but it is so hard. Fortunately, when he's not having too much of a bad time they get on really well.

 

This year has been really tough for her because Com has been in crisis and we're pretty worried about her just now. She has her own problems to cope with too - dyspraxia, dyslexia, malformed vertabrae which cause stress fractures in her back and bowel problems - and yet she tries to bear it all in such a grown up way.

 

we haven't been referred to social services even though the doctor and a consultant have said her worsening bowel problems and current constant headaches are stress related so I'm going to refer us myself I think.

 

School has been aware of Dot's extra package of care since she arrived but didn't seem to do much about it last year (but then she did have the most amazing, caring teacher - also the senco - who really appreciated her and kept her self-esteem sky high).

This year with the headaches they are really taking notice though and have put her on the learning mentors list - it hadn't occurred to me to ask for this (how dumb am I? - I used to refer the very same kids and didn't even think of Dot as one of them ). Going in tomorrow to talk to the learning mentor to let her know just how much she has to bear.

 

Zemanski

[oracle]

Mother in Need - where do you live? I know that all Carers are not as big as ours, who has at least two, maybe even three seperate groups of Young Carers, but I would really like to know if it is a Princess Royal Carers Centre?

 

thanks

 

Carole

[Mother in Need]

Sorry I can't answer the exact question, as I wasn't the one doing the asking.

I live in Cornwall, and there doesn't seem to be much help out here. Oh yes, they (SS) have lots of leaflets, even a book written about what's on offer, but the reality is somewhat different...

[call me jaded]

I think you have to designate a governor for Looked After Children. Shall go and look to see if the DFES have anything to say about Young Carers.

[call me jaded]

Hmmm not much:

 

http://www.teachernet.gov.uk/management/atoz/y/youngcarers/

[Mother in Need]

? a child or a young person who is carrying out significant caring tasks and assuming a level of responsibility for another person which would usually be taken by an adult.  The term refers to ? young people under 18 years caring for adults ? or occasionally siblings ?

 

Mmm, not sure if my boys are considered young carers then, I don't dare leave them alone with him, but still, they have to bear the brunt all the time and behave so much more responsible then other kids their own age.