Sally's World

Do you know why we’re not valued? … I'm sick of this sort of thing happening!

When I got caught up in a fight about the education department's duty of care to my son earlier, they all looked shocked...why??? was it because I was eloquent and knew my rights??? they even asked me what I did, I said I was a full time mum..then someone (who is still living...just!) said "but you're not JUST a mum are you?" ermmm.... what???? JUST a mum!!!

There's been some coverage recently about how poorly carers are paid and treated, and its just getting worse...can anyone explain to me, how one of the most important jobs gets the least amount of respect???

This ridiculously small amount of money is supposed to make up for the fact that carers can't go out and earn a full time wage...but where on earth do the government think they will be without carers...they'd be forking out a damn site more money for full time nursing homes, nursing care and residential schools and homes.

Parents who want to keep their children home with them are punished, is it any wonder that single parents find it almost impossible to cope!

The recent increase in the minimum wage has left some carers several hundred pounds out of pocket, Money Box has learnt.

Any carer who works for 16 hours a week at the new minimum wage rate of £5.95 now earns £95.00.

This is above the £95.00 earnings threshold for Carer's Allowance and means they are no longer entitled to the weekly payment of £53.10.

And this revelation comes in the week the government launched a £33 million initiative to help carers.

To read more go to...
http://news.bbc.co.uk/1/hi/programmes/moneybox/6390409.stm

Its nothing short of insulting...it devalues and demoralises! Something needs to be done NOW!



Please write to your local MP and demand that they take action.

Here is an interesting article that was posted on the Telegraph web-site last November By Julie Henry, the education correspondent for the Sunday telegraph.

Special needs children failed by the system

I have just received a call from the worried grandfather of an autistic boy whose parents are being forced down the route of a special educational needs tribunal in a bid to secure the right school for him.
The boy had, up until now, received one-to-one support in his mainstream school. He is at the high achieving end of the autism spectrum and seems to have a special aptitude for maths.
Because of cut backs however, that support has been withdrawn, making it very difficult for him to cope in a run-of-the-mill school. Yet the special school that the council is proposing for him is totally unsuitable. Children there have a range of profound needs and what they are taught has only a passing resemblance to the national curriculum.
The boy's parents are convinced their child would go backwards in such a school and they are probably right. The grandfather is paying for legal representation, which is increasingly vital if families are to have any chance of success at a special needs tribunal.
It is a heartbreaking case, highlighting many of the frustrations felt by thousands of parents with special needs children.
Inclusion in mainstream schools, while a laudable aim, has been seriously underfunded, leaving many children feeling lost and isolated. Special needs schools have been closed, with the loss of thousands of places. In some areas special needs provision has been merged, bringing together children with a wide range of learning difficulties and disabilities, making it more difficult for teachers to deliver lessons that meet children's needs.
The human cost is evident. Parents worried sick by the prospect of a child regressing after so much hard-won progress has been made and a grandfather spending his life savings trying to ensure that does not happen.

To see the article itself and a response it received from a reader, click on

http://blogs.telegraph.co.uk/julie_henry/blog/2008/11/26/special_needs_children_failed_by_the_system

This is a direct example of how the system is getting it so very wrong…again!

No-one is considering the child or their families when they make the decisions with regards to special schools.

This story is only too familiar to me.

My son Deion is 11, and he has done very well in a mainstream primary school. Mostly due to the fact that is an excellent school and the teachers and staff go that extra mile for all their pupils. Deion is a child with very obvious difficulties. He is a wheelchair user, triplegic, has little trunk control and is incontinent. Yet it was still a struggle to get him the (very obvious) support he needed.

Now we are going through the secondary transfer process and are embroiled in an even bigger fight.

Inclusion may be the 'catch word' for education at the moment, but unfortunately the concept has not filtered down to the people designing our ‘mainstream, special needs inclusive schools.’ The toilets are inadequate, the classroom sizes, though big enough have not allowed the right access, the lifts are small and the corridors too narrow in most cases.

It is going to involve a lot of work to make it possible for children like Deion to attend.

And as the response above states, it is far too much to expect a teacher to take on the role of special needs teacher on top of already teaching their oversized classes. But at the same time, this should not be the parents concern, parents cannot be expected to allow the system to just ‘dump’ their kids in a ‘special’ school’ simply because they have a child with a 'special needs' label.

And that’s one of the things that is failing. The term ‘special needs’ to someone in the education department just means ‘disability’ it seems to be a blanket term for everything ranging from mild autism to severe cerebral palsy, and everything in between. They just do not seem interested in a child’s particular needs. To the family involved, special needs is a very personal term. Personal to the individual child.

Stop trying to lump all our children together as if one term fits all…we’re sick of it!

And sadly, what it all boils down to is money, the education department want to find the cheapest way possible to school our kids, but still be seen to be doing the right thing.

Well they can’t have it both ways!

What is needed is more money; but first, it’s the attitude that needs to change. Then the basics need to be taken care of with regards to suitable access and toileting facilities. Then there need to be key workers, one to one care enabling children with special needs to go into mainstream schools with the proper support.

And although it is true that there are parents who will manipulate the system, for reasons only they know, maybe it is for significance or to lessen their own responsibilities. But what I do know is, children and families who really need the support cannot be punished because of it.

Yet, all that appears to be happening, is education making cuts where the money is most desperately needed.

Regardless of disability or special needs, our children are this country’s future. Education needs to top trying to make out that disability or special needs are a burden and start looking at individual children, realise that they are productive and valuable members of society and give them all the education they have a right to.

Yes, I understand that the money has to come from somewhere, but investment in the future, is surely the way to go. And that means investing in our children…all of them.

And as much as I don’t wish to tell the government to do their job (well…!!!) perhaps the £10 million pounds recently allocated to training SENCO’S (special educational needs co-coordinators) to be teachers as this article from the guardian states, could be put to better use within the system!

http://www.guardian.co.uk/education/2009/jan/02/specialeducationneeds-schools

I'm just one parent, but I know I am not alone in the way I think.

Sal xxx

Well, I have still had no news of the results. I phoned the hospital every day last week, and also this morning, but they could still tell me nothing.

The interesting thing is, the neurologists told us that until they had the results from these tests, they could not determine the next step, they couldn’t decide on the what follow up tests were needed and so on.

So I was more than a little surprised when I got a letter in the post this afternoon from the clinical neurophysiology department at Guys hospital, asking me to take Deion for muscle and nerve tests in a couple of weeks time.

I rang the department to find out more, they were very helpful with regards to telling me what the tests entailed/sedation/consent forms e.t.c. But all they could tell me about the reason for said tests, is that they were ordered by our own neurologist based on results from Deion’s previous tests.

Wouldn’t it be wonderful if someone could phone me, or alternatively phone Deion’s GP or Community Paediatrician, so they can tell us those results? As usual, as parents, we are the last ones to find out.

I guess we are a little confused, the doctors said the tests were necessary, they said we shouldn’t wait, that he may have a treatable condition….this is why we went ahead, and this is why it feels like it matters so much to get the results and move forward.

So I guess its good news that we have our next step, I just feel as though I have no clue what is going on, and he’s my baby (although he’d kill me for saying that). Maybe I’m wrong to feel as though I have more right than anyone else on the entire planet to know what they ‘think/suspect/know’ is going on inside his body!

Its not easy for us parents to place our trust in doctors, are we expected to do this without question? Are we supposed to feel guilty for questioning their methods?…perhaps if someone could re-send a copy of the rule book with regards to what we can and can’t ask these doctors about our own children, that would be great!!! I seem to have misplaced mine.

I seem to continually annoy doctors’ by asking questions about my own children...if I ask a question about the next step…or god forbid, time scales, I get looked at as if I’ve just suggested ritual animal slaughter or told them I listen to Barry Manilow records, either way, they look at me like I’m quite mad for questioning them.

I doubt it will put me off though, unluckily for them!

Take care

Sal xxx

Thank you for your e-mails and comments on the ‘be careful what you wish for blog.’ Mostly people were supportive of what I said, but one or two people either disagreed or misunderstood me. This is fine of course; I don’t expect everyone to agree with me, I just am giving my own opinion. In fact, I’d worry if everyone agreed; it’s certainly not what I’m used to indoors!



I would just like to clarify two things:

Firstly, I do not think that a child has to be a wheelchair user to qualify for any special needs services. Not at all, many of the special needs children I know are not wheelchair users. I am fully aware of the huge array of special needs that do not affect mobility. So I can assure you this is not what I meant at all. All families who have children with any kind of special needs are entitled to all the services available.

Secondly, no, I didn’t literally mean that any parent who claims to have a special needs child when they don’t deserves a disabled child. I also don’t think having a disabled child should have such negative connotations either; I believe we should be grateful for all our children and recognise their perfection regardless of special needs. And once again, it’s not about the parents it’s about the child. I merely meant that people should be grateful that they have healthy families and don’t have to worry about hospital appointments/physiotherapy/occupational therapy/speech therapy/feeding clinics/incontinence clinics/wheelchair clinics/child psychology/dieticians/adaptations/equipment and everything else that goes along with special needs. I think that many parents don’t understand the implications of special needs, and as rewarding as it is, it certainly turns your life upside down.

My point was, none of us, when we are pregnant sit there and pray for a disabled child, we may say we’d like a boy or a girl, but I’ve never heard anyone hope or wish for cerebral palsy or autism. The reality is we adore all our children regardless, but healthy, happy babies are what we wish for.



So, yes, all families need help, yes there may be many issues with pensions, benefits, housing and services in general. But it is an undeniable fact that not everyone is honest, and this has a big impact on the benefits and services that are available.

But I’m glad you asked… It is interesting to see how differently people feel,or what they get out of the blogs I write. and I will always clarify anything I have said.

So keep e-mailing and giving your comments,

Take care,

Sal xxx

Trojan and I did our third live radio blog yesterday afternoon, we spoke for 45 minutes about the lack or respect and appreciation full time mums/carers get from family, society and the government on the whole. Obviously it’s a subject very close to my heart, and one I am very passionate about. So please click on the radio blog to the right and have a listen, and let us know what you think. You may agree or disagree, we want to know either way.

As promised in that radio blog, I have a small list of agencies/support groups who may be able to help you get what you need and you are entitled to.

http://www.familyfund.org.uk/ A charity aiming to support, advise and possibly help with funds for families with severely disabled children.

http://www.carerslewisham.org.uk/ A charity providing advice for people looking after ill or disabled friends and relatives. Directory of support groups and meetings.

http://www.carers.org/ For support advice, information

http://www.direct.gov.uk/ For information on being a carer

If you contact your local borough council, you can find out lots of information on the groups you have in your area. I know first hand how isolating it is at times to be a carer; there is help and support out there for you. Not as much as there should be, and not as widely publicised, but it is there.

Also don’t forget to look up wish foundations, they are a lifeline for families who have children with life threatening and terminal illnesses, we had a foundation help us and it made a huge difference to us as a family.

And of course, I’m here if you think I can help you with anything, or point you in the right direction.

Take care xxx