Sally's World

Heartwarming!

So Gentle!

Blissfully happy!

Loving and nurturing!


Kind!

???????????

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

Just a quick reminder to say don’t forget to tune in to our live radio show 5.30pm tonight. We are going to be talking about the issues surrounding being a full time mum and carer. There are so many issues on this subject that effect how we feel about ourselves and what we do, and what we feel we contribute to society and the family unit. You can phone in and have your say, agree, disagree, whatever you want, as always, we love getting your views too.

We will ask why it is predominantly women who end up filling this role? Is this another outdated tradition, or is it the way it should be? We will explore how we end up where we do in general, is it by spoken agreement, it is just presumed, has it just ended up that way? Who is it that decided these things? Has maternal instinct got a lot to answer for? And even if we chose it, are we happy where we are, can caring alone be fulfilling? What message are we sending our children? How do we feel about the stereotypes society has about our role in general?

Big breath!

So we will explore as many of these issues and feelings as we can.

Please also log on later tonight or tomorrow and see what we managed to produce in the way of video blogs, we’ll try to stick with the same subjects to a certain degree, and if we have time (if Trojan has time I should say) we’ll record another video advertisement, the last one was very popular, maybe I’ll try to tip Trojan off his chair or something, because everyone seemed to love the blooper…I’ll see what I can do.

See you later

Sal & Trojan xxx

Well, they let us home from the hospital today, I’m a little concerned that is was more to do with the fact that Deion was constantly demanding food and chatting the ears off the nurses than that he was actually alert enough from the anaesthetic to come home.

I was up late last night packing his bag…and don’t think I’m talking about pyjamas, reading books and slippers, I’m talking about chicken drumsticks, Doritos, chocolate chip cookies, Haribo and a Satsuma…the Satsuma was for me.

Sadly, I underestimated, and in the last four hours, he still needed two hospital meals, one of the nurses lunches and a constant supply of drinks…with chipped ice if you don’t mind, not the cubed kind!

I’m not sure he was totally ‘with it’ as we left the ward and he drove his chair down to the car park. After taking out a potted plant, a chair and a doctor, I realised, he might not be fit to drive after all.

Is driving a wheelchair under the influence the same thing as drink driving, I’m not sure. It may seem less dangerous, but if you’ve ever been run over by an electric wheelchair, you know it’s no joke!

But in all seriousness, Deion was a star, he hated the starving part, but he was great when they do the blood tests and put the drip in and stuff. He had a muscle biopsy, a lumbar puncture, and an arterial blood test. All went well, and apart from feeling a bit sore, he is fine. He’s gone to bed now and I expect he’ll be using his sore back as shamelessly as he can, and we’ll all be charging around catering to his every need all weekend.

I also had to explain to Jordan, Robyn and Dave that Deion was not halucinating, as they presumed on hearing about it. And we did actually see a storm trooper in the lift at the hospital. It was a little surreal, I got a fit of the giggles, and the stormtrooper looked at me as if to say 'grow up' which made it worse. But he didn't shoot me!!! so that was okay!

We’ll be getting the test results in a week or two, so fingers crossed for good news.

And I just want to thank everyone for your messages of support. Family and friends obviously texted, phone, e-mailed and sent their love. But we also had many good luck messages from people who only know us through the blogs. So thank you, we are touched and everyone’s messages of support were much appreciated.

I need to go and get some rest now, Deion’s going to have me on my toes tomorrow.

Take care

Sally and Deion (Demon Driver) xxx

Do you know why we’re not valued? …I do, it’s because we don’t bloody well value ourselves enough thats why.

When you’re out and when someone asks you what you do…how many of you feel happy saying I’m a mum, how many are proud to say I’m a carer. More importantly how many of you have said those words and seen the look of disinterest in the person's eyes. And sorry to say it, especially if it's a man who's asked.

Of course being just a mum and a carer means you couldn’t possibly have anything of interest to say to that person. I’m sure they’ll soon be scuttling off just in case you start talking about nappy changing, children’s books or god forbid…childbirth, after all, that’s all we could possibly know anything about.

No, its true, I couldn’t possibly be in my fourth year of a psychology degree, couldn’t possibly be a published author, couldn’t possibly speak two languages, run my own business and know more about advertising, marketing, taxes, finances than most people in the room….nope, I’m a mum, a carer…see ya!

Of course that person may have more luck next time, the next person they ask may be a teacher, a receptionist, a lawyer, a doctor, a chef…you know, someone who really contributes something to our society, not someone who sits at home all day drinking tea, eating cake and watching daytime TV…thank goodness, this time they might find someone who has something interesting to say.

Of course, you may walk past them ten minutes later and hear them talking about Eastenders as if it's real life…what a shame you missed out on that intellectual conversation…after all, I for one wouldn’t be able to hold my own in a conversation about any of the soaps on TV…I don’t watch them, I’m far too busy editing my novels, doing my tax returns, arranging hospital apointments and making sure my kids, husband and customers are happy to sit on my arse and watch TV!

So when someone asks…say it, say I’m a MUM! I’m a carer, and you know what, if they look bored, feel free to tell them that there’s no point in having a conversation with you because YOU are way out of their league, there’s no way they could understand someone as complex as you…they don’t hold a candle to you and you need to know that. As soon as you believe in yourself, it will shine through.

Right, I’m off to beat someone up…

Sal xxx

Today we are going to talk about an issue that many mums and careers have to deal with. ‘Lack of self worth’...uh oh!

Those of us who do not leave the house to do a conventional job, often feel like we're not seen as productive, contributing or valued members of society. Of course no-one sees the sheer magnitude of the stuff we have to deal with on a daily basis. There are days when as a parent/carer we’ll have a ‘to do’ list that would make a grown man cry…and all on less than four hours sleep in many case.

We’re not just housewives (god I hate that word!) like any mum, we’re cooks, cleaners, nurses and anything else raising children and running a home entails. As carers, we have the added opportunity to experience being physio therapists, psychologists, support workers, speech and language therapists, dieticians, occupational therapists…we have to keep up with dozens of appointments, add to that the fighting the system for school placements, key workers and equipment…are we having fun yet?

Then there’s often physical stuff, the lifting and handling…honestly I could arm wrestle Hulk Hogan and win after the lifting I’ve done over the years. I’m stronger than I look…and my godson deeply embarrassed his parents with a comment a few weeks ago as I helped them move furniture…”Auntie Sal aint ‘alf strong for a skinny bird” he said….his mum was affronted that he used the word ‘bird, and an argument ensued with his father on encouraging improper labels…I was just sadly thrilled that he thought I was skinny!

I have a feeling that a lot of women share these same thoughts of not being appreciated. Why is it that women are generally the ones that end up in this role in the first place. Is it by choice of by accident? Is it because the roles are so inherent in society. Women can earn as much as men now, so why are men still predominantly the breadwinners while women take care of the house and the children. Regardless of whether the woman works too.

It’s time that society started to recognize the importance of carers and all they do and contribute. What we do is beyond monetary value. As mothers we are raising the next generation of people who will be running the country. What we do is the most important job in the world. Can’t we acknowledge this on whole?

So the radio blog this week will explore and identify the value of our contributions as a mums, carers and friends. We can talk about how we feel our role is valued by society at large and also how it’s valued closer to home. If it was men having to make the decisions regarding their children’s schooling, hospital appointments, medical care and deal with the day to day running of the house, would it be more valued by society? Would it suddenly be an essential contribution to society as a whole.

We will also talk about how we ourselves contribute to this perception and what are we doing about it. Should we be asking if it’s acceptable, should we be demanding the respect we deserve?

Who are we? What makes us ‘us’, you and what example do we set for the people around us? Are we setting our children up to take on these same roles later on in their own lives.

None of us have all the answers but we can learn a lot by talking, listening and changing the negative mindsets that society, the government, our own families and we often seem to have of ourselves. This may be a good way to explore these issues and at the same time make a difference to someone else in a similar position.

These blogs have always been about reaching out to others and this way we can hopefully reach some of the least appreciated people in today’s society.

So let us know your views, if there is something specific you want us to talk about, and of course tune in to the show, you can phone in and have your say.

Right, I’ll take a breath now, as you can see, I feel strongly about these issues, I hope you do too.

Sal xxx

A good friend sent me an e-mail yesterday, this was part of that e-mail and it touched me.

This is a poem written by the beautiful Audrey Hepburn, it was read out at her funeral, I thought I’d share it with you.

“For attractive lips, speak words of kindness.
For lovely eyes, seek out the good in people.
For a slim figure, share your food with the hungry.
For beautiful hair, let a child run his/her fingers through it once a day.
For poise, walk with the knowledge that you never walk alone.
People, even more than things, have to be restored, renewed, revived, reclaimed, and redeemed; never throw out anyone.
Remember, if you ever need a helping hand, you will find one at the end of each of your arms.
As you grow older, you will discover that you have two hands; one for helping yourself, and the other for helping others.”

Perhaps if we all tried to live life in this vein, the world would be a much nicer place.

Humbled,

Sal xxx

My day so far has led me to question whether we are a nation of people who are so self absorbed in our own lives, that we don’t stop and give a second thought to what someone else may be going through. Or is it that we realise the difficulties, but we just choose to ignore them.

Deion had a hospital appointment this morning, and the sheer amount of doors that got slammed in our faces, and the number of people walking in front of us had me looking down at us both and questioning whether we were actually invisible.

Then I had to go to Tesco’s to do some food shopping, there was a lady selling the big issue outside, I said hi and told her she could have my trolley pound on the way out, my usual small contribution. But as usual I was surprised at the number of people who not only ignored her, but shot her a look as if she was something they scraped off their shoe. Not like she was someone, down on their luck and trying to do something to help themselves at all.

Inside the entrance was a blind man and his dog with a collection box. I had some change in my pocket, and heard it hit the plastic at the bottom as it went in. On the way out, after an hour and ten minutes in the store, I put my newly acquired change in his collection box…and I was surprised that I still heard it hit the plastic. “How long have you been here?” I asked him. “Three hours,” he said. “and how many people have put change in your box?” I said. “Four,” he answered.

This is surprising isn’t it, that a man can stand collecting for people who are missing, in my opinion, one of the most precious things of all, their sight, and no-one stops to put their small change in the collection box. Surely, it’s just a few sweets, or half a pint down the pub even, but still hardly anyone bothered.

Are we not able to see that we can do some good, is it possible that we care so little of the plight of others that we cannot spare a few pence, or a pound to help. Then of course, if you can’t spare the change, holding a door open costs nothing!!!

Of the thousands and thousands of pounds that got spent in Tesco’s yesterday, a few pounds for a good cause doesn’t seem so much to ask does it?

Maybe I’m feeling a little emotional in my weakened post viral state, maybe I’m sick of people nicking all the disabled parking spaces, slamming doors in Deion’s face or ignoring any person who needs help. Whatever it is, it has really got to me today.

Take care, think of the needs of others and be generous when you can.

Sal xxx

We’ve been getting such a positive reaction from the video and written blogs, that Trojan has had another great idea…he’s on fire at the moment. He’s a one man marketing/advertising/promotions team!

So now we are adding radio blogs into the mix. This means we’ll be able to have more in-depth chats about the issues that the blogs are raising for all of you and hopefully we’ll be able to help more people and give more advice.

We got together yesterday and had a practice run, it was a lot of fun, although I don’t think it actually make much sense. I introduced the show, introduced Trojan and we proceeded to have a chat about everything from amateur dramatics to how Trojans ears pop when he’s on an airplane. That’s if you could make anything out amongst our laughter and the kids playing in the background.

As you know from the video blogs, Trojan is quite expressive with his hands, and the fact that he had his phone in his hand while he was talking only meant I had to practically leap around the room to talk into it. Of course afterwards, he told me it was on loudspeaker and would have picked my voice up anyway, but I’m not all that good at this stuff, so I didn’t know that.

Afterward we listened back to it and laughed even harder, I, apparently say ‘really, yes’ or ‘absolutely’ every ten seconds when someone else is talking…why has no-one ever pointed this out to me and told me how annoying it is? I also realised how fast I talk and how I get louder and louder the more animated I get.

Then we listened to a couple of other pre recorded shows from more experienced broadcasters, and Trojan got quite cross with me because I didn’t introduce him as ‘my fabulous co-host’ like the other broadcaster did. For this I apologise…you are totally fabulous Trojan.

So on Sunday we will be broadcasting our first live radio show at 5pm, you can go to the link on the blog page to listen in. And all joking aside, it is a very serious topic we’ve chosen to talk about a topic inspired by the e-mails we’ve been receiving in reaction to the blogs. It is about how disabled children are viewed by family, the education system, the health system, society and the government. So the title of this show will be “Disabled Children Precious Gift or Extra Burden.” we know its controversial, but we also know its important not to shy away from the issues just in case people find them uncomfortable.

We hope you join us and give us your views, it is important to get lots of people points of views on the issues, not just our own. So we’ll sign in and see where it takes us.

We will be recording another short video blog too, we’ve decided not to choose a subject, and to be spontaneous…oh goody!

See you Sunday

Sal & Trojan xxx

I’ve noticed that there is a trend in the e-mails I’m receiving from some of the mums who are following the blogs. That is that many seem to be angry that it is their child who was born with a disability. While I totally understand it, and know it is a perfectly natural reaction to finding out your child has special needs, you cannot allow it to affect your lives.

You have been given the most amazing opportunity. You get to take care of a most precious child, an extra special child. You need to feel blessed and grateful for that. Whilst it is a very different life than many parents and families will experience, it is incredibly rewarding and fulfilling as long as you embrace it wholeheartedly.

So by all means get angry, but direct it at the right people (which definitely is not yourself as some mums feel). My anger is not at having children with disabilities, it is at the system that makes getting my kids what they need so hard. So that anger can be productive, it is the fight and determination that means you will achieve what you need to for yourself and your child.

You cannot let the anger get to you, because it will affect the life you have with your child. If anger is the focus, fun and laughter won’t be, not all the time. And what matters, especially to kids, is fun and laughter. Live life, make it fun, make it count and make sure there are no regrets and ‘should haves’ when you look back.

Of course, you may not see it that same way as I do, not everyone has my views and ways of coping, and I respect that. So please, please feel free to comment and give me your opinion. Also, if I can give you any advice on the practical issues surrounding disability, then you just need to ask, if I can’t help, I bet I know someone who can.

So, word for the day…Gratitude!

Sal xx

I know it’s a bit late in the day for me; normally I’ve gotten a couple of new blogs on here by now. It’s just been a rather hectic day. Its half term anyway, so getting all the normal stuff done seems to take twice as long. I got all my housework done this morning, walked into the kitchen to put the kettle on and in the minute and a half that small task took me, Armageddon had occurred in the living room. I’m not sure how it happens. Of course, none of the kids knew anything about it despite being the only ones in the house! So I ignored the mess and got on with my ‘to do’ list. I’m a fanatical list maker, that’s how I get everything done…organisation, organisation, organisation.

So one of my many tasks today was speaking to the special needs education department about Deion’s Secondary school transfer. We’ve been trying to sort this out for a while now and its proving to be more difficult than even I envisioned, (and you know how pessimistic I am about these things!)

The key word floating around at the moment with regards to education is ‘integration’ if only someone would explain to the education department, the people building the schools and the governing bodies what that word actually means, it would be of immense help. To me integration means that any child can go to any school, regardless of physical limitations, incontinence issues and need for a specialist equipment and lap tops.

So why, when all the secondary schools in our area have just been rebuilt at immense cost, has this not become possible. They have got lots of things right, the schools look great, state of the art in fact, the computer facilities and sports facilities are equal to none. The classroom sizes are good, the corridors are wide...great. But somewhere along the line, the need for adequate toileting facilities got lost in translation. Although there are plenty of disabled toilets, none of them are big enough to accommodate Deion’s needs. For the average wheelchair user who can transfer onto the toilet by themselves, they are fine. But for children like Deion who need a changing bed, a ceiling track hoist and adequate washing facilities, let alone having another person in there to assist him…they fall very short of adequate.

When viewing every school within a twenty mile radius, I had to question the education department on who they took advice on, and how it could have possibly got missed. Sadly, their reaction was to tell us to choose a school that ‘should’ be ready on time, and ‘should’ have adequate hygiene rooms. Of course, you know me well enough by now to know I didn’t just accept this, in fact I questioned if the criteria they used when choosing a school for their own child was nothing to do with the school, the teaching system, the results and Ofsted report, but they just headed straight for the toilets, said “yep, we like the toilets, our child can come here.” “Of course not” they said affronted. “Then why on earth should we?” I asked. Silence!

But why should we. Why can’t we just choose a school like everyone else? So now, needless to say we are now embroiled in a nice big battle so that Deion can go to the school of his choice, the school his brother goes to. Round seventy six…ding, ding! And as much as I don’t really need another fight on my hands right now, I can’t see a way around it.

To be fair to the actual school we have chosen, they are being really supportive, and we can’t blame them for not understanding the needs of many wheelchair users. But the education department, the council, the architects and whoever else is responsible for the specifications, should have looked into it, got thorough advice and got it right. It would have taken nothing more than a meeting with a couple of Physio therapists and an occupational therapist to get the right advice.

Now everyone is worried about the cost of adapting the building, education say health are responsible, health say education are responsible, as usual a child getting what they need and deserve boils down to money. It’s a real shame I think.

But we’ll get there, Deion will go to the school we have chosen, and everything he needs will be in place. I may have to jump up and down a bit, write a hundred letters or so and about a thousand phone calls…but I’m rolling up my sleeves, even as we speak.

Another day another fight…

Sal xxx

Hi there. Well, i'm still laughing after completing my first ever video blog with Trojan. Okay, so it turns out I say 'Ermm' alot, and 'Ummm' and to the surprise of anyone who knows me, I often seem to get lost for words. But I think we get the message across. If nothing else you all know more about me after watching it (mainly my inability to speak properly).

We'll be back next month with a new video blog, we'll let you know what's been going on in the meantime and hopefully I will have answered lots of questions and been able to help a few of you.

I'll be writing a weekly update on any news and events and generaly what's been going on, I'm always in the middle of a battle with something to do with one of the kids. Secondary School transfers with full inclussion is the latest in a long line of fights to get my boys what they need and are entitled too.

So look out for the weekly blog and we'll 'see' you again next month in a new video blog, in the mean time I'll be working on speaking without saying 'ermm' three hundred times a minute.

I hope some of you will be logging on to the web-sites, taking a look at Aaron's books and maybe buying a t-shirt or two for someone you know.

Take a look on http://www.youtube.com/sallyannestephenson