Sally's World

Jordan has gone to school to get his exam results.

I'm not really worried (she says as she paces the room and bites her nails), Jordan is brighter than most, certainly left me behind in the school work years ago. He's not nervous, he says he knows he's aced them (note to self, do something about Jordan's confidence levels)

Its a first for me, even though he isn't my eldest, Aaron never took exams, even if he'd still been with us he wouldn't have. His achievements were measured in many other, and quite frankly, more fun ways by his school.

It will be different again for Deion. Deion has already shown some nervousness about his. He's just done the Sat's at primary and he found it quite stressful. He got extra time, there is a system so that depending on disability, extra time is awarded, and Deion can even have a scribe for some parts, and can use his specially adapted computer for others.

But all this stuff is time consuming, so even though Deion knows his stuff, he finds it hard to record it in time.

I've told him not to worry about it now, its three years away (but oh my, how quick that will pass)

I guess its just one other thing he has to deal with.....

My daughter came home from school today telling me how a boy had come to her school and threatened a girl with a knife…

Was the world such a violent place when we were growing up, or where we just shielded from it, was there just less media courage?

All I know is that when I was younger my parents felt safe when we left the house. But for me, now, it’s getting to the point where I’m frightened to let the kids go to school, every time we turn on the TV or open a newspaper, another teenager has been shot or stabbed. And it seems to be getting closer to home.

Should I really have to say to my fifteen year old, “if someone threatens you for you phone or money…give it to them, don’t fight back.” After all, phones are replaceable, my kids aren’t, but kids are getting stabbed at an alarming rate for mobile phones, i-pods, or anything come to that.

I’m sick of opening the paper to headlines about knife culture, gun culture, gang culture. Gangs are on the rise, and apparently it seems to depend largely on you school and postcode…quite frankly I’m terrified. I ask Jordan and Robyn what they see or hear about, and they seem quite matter of fact about knowing it goes on. They tell stories about one gang member turning up at school to fight another every now and then and it terrifies me.

I know there were fights when I was at school, but never more than fists…or a bit of bitch slapping or hair pulling if you were lucky!

When I pick the kids up from school, there are always police around, dozens of them, they want to put metal detectors in schools to stop kids carrying weapons…it was never like this when I was young, I don’t know a single person that carried a knife. And these are the GOOD schools!

What frightened me a few weeks ago was, as part of the crack down on knife crime, the police stopped a bus in the morning, it had nothing but school kids on it, the police searched and they found no less than 23 weapons…23 weapons amongst a bus full of 12 to 15 year olds.

What are we supposed to do, wrap our kids up in cotton wool, keep them home, tell them to run, what about Deion, he can’t run, there’s a big increase in disabled people getting mugged and robbed too, its a bloody mine field…

And opening the paper to this…is why…

29th December 2008 - New Knife Crime Statistics
The new figures indicate that in the year 2007-8 there were some 277 deaths from stabbings in England & Wales alone (the highest recorded figure for 30 years). This represents an average death toll as a direct result of stabbings of over 5 for every week of the year!

Was it always this unsafe? Do you remember anyone you know getting stabbed?…every kid I know, knows someone that has either been stabbed or been affected by it…love to know if it’s the same for you and your kids!

My daughter Robyn has dyslexia, but she does not let it get in her way...in fact Robyn lets nothing get in the way of what she wants, but that’s another story entirely.

When she was younger, spelling tests were hard for her, but she would work and work at it every week to ensure a good mark. On the one occasion a class mate suggested her 15 out of 20 mark was because her dyslexia made her stooopid, she asked him what he got, he didn’t want to tell her, but upon seeing his 12 out of 20 mark, she flicked her hair over her shoulder and said “you wish you had dyslexia”.

So no problems with it making her feel inadequate then.

Robyn is the inspiration behind the dyslexia range of t-shirts, and is single handled responsible for raising awareness within her school and her peer group. She makes sure anyone with dyslexia has a shirt to show how proud they are. And as Robyn says “I can’t be good at everything mum!” or if Dave or I make a spelling mistake, Robyn will say “and I’m the one with dyslexia!” with a roll of her eyes. You may smile, but its not always cute, sometimes it’s a little embarrassing.

In Robyn’s own words, “In the grand scheme of things, it’s hardly a big deal is it!” I guess having brothers with far greater special needs helped to put things in perspective for her.

Robyn knows that her dyslexia not make her stupid/or stooopid, she knows that with hard work, she can do just as well, if not better than most others. So she knows that if she can have dyslexia and get the same results, she must be even more intelligent…I second that. Imagine simply reading a book or the newspaper and before you even start, you need to decipher some sort of jumbled up code…would we just give up and watch the news or a DVD instead, after all, its hardly relaxing if your fighting to understand words is it.

And if you were in your early teens, would you have continually struggled with your school work, or would you have given up, even messed about, and like thousands of kids have been labelled a problem child and let the education system wash its hands of you…how would that effect your future?

This is one of the reasons kids with dyslexia get left behind, and one of the reasons that kids and their parents love the slogans so much. Times are changing now, dyslexia, like many special needs is widely recognised, there’s no stigma attached to it, and there is help available in every school. For example, arrangements can be made so that your child can have extra time for their exams and most schools provide extra help in English and literature.

There’s a British Dyslexia Association for help and advice should you need it…go to http://www.bdadyslexia.org.uk/ for information about getting exactly what you need.

The onus lies on us as parents to make sure our kids are secure and confident and know that dyslexia is nothing to be ashamed of. Charleze Theron, Einstein, Hans christen Anderson, Magic Johnson, Agatha Christie, Richard Branson, Keanu Reeves, Jamie Oliver…all dyslexia sufferers, it didn’t seem to hold them back.

So Robyn wanted you to know this, and she also wanted you to know that I use spell check more than she does…cheeky!

Take care

Sal & Robyn

P.S. Since writing this blog someone left a comment to say that www.causesofdyslexia.com is a very informative site. He was right, so check it out.



xxx

Hi everyone, I just wanted to thank and acknowledge everyone who has listened to and given us positive feedback on the radio blog.

As with the video and written blogs, Trojan worked very hard at getting this off the ground. The visuals and all the technical stuff is down to Trojan, I just show up and chat for a few minutes, or write something down and hit a button, Trojan does the rest. As you can see here in this incriminating evidence...Trojan working hard, and me with a cup of tea in my hand!!! oops!

We did have a few minor technical issues with the show, (it was our first one after all) we got cut off a couple of times, but we were very proud of what we ended up with. So if you click on to listen, just persevere with it and I promise we do come back to you fairly soon.

You can tell we get more and more comfortable as we got into it and we managed to cover quite a lot of stuff, mainly how many things, like education, attitude and family life is affected by disability. I will admit, I committed my usual sin of jumping into the middle of some of Trojans comments or questions, and I have to give him credit for not giving me a swift kick to the shins…he could have got away with it on the radio too!

Our aim is for anyone who is interested in the issues to be able to listen while going about their daily lives, become regular listeners and to contribute their own views. We are very interested in hearing your comments and your point of view so please get in touch and let us know what you think.

Take care

Trojan and Sally xxx

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

People ask me time and time again how I find the energy to do what I do. I'm often asked how I have the strength to fight over and over again just to get the things the boys need, the things the boys are entitled to.

Well, you've heard of extreme sports, what I do I guess is extreme parenting. I go after what my kids need and I don't stop until they get it. Some liken me to a German manned torpedo, personally I think 'cruise missile' sounds far nicer! But really I just prefer to look at it as standing up for my rights and the rights of my kids. Because if I don't, who else will?

And it is a fight. Sadly nothing is offered, even the most basic things like home adaptations, communication aids and much needed equipment don't come easily. You have to fight for it all. But I stopped being surprised about that a long time ago, if my boys need anything, I just pull on my big red gloves, ring the bell, ding ding ding, round one, two, three....whatever it takes.

You know, I think that half the time the powers that be just give me what I want to shut me up. But I refuse to be intimidated, I refuse to back down when I know we are in the right, I refuse to let someone sitting behind a desk, with no clue about our life dictate our future. And it's that same fighting/stubborn streak that Aaron inherited, the same one that meant he refused to give up and stick around longer than anyone ever thought was possible.

So I will continue to fight, for one thing, it says a lot about who I am, about the strength of character I want to pass on to my kids and it means my kids will want for nothing. And once I win one fight, I move right on to the next, passing on what I've learnt to other mums like me, who in turn pass it on to people they know. So slowly families are getting to know their rights, getting more for their kids and having more productive lives.

So it's the fight that gives me the energy, its the winning of those fights that continue to give me strength and a sense of achievement. So keep fighting, and once you start winning you have the strength and energy to do more and more. You can't let them win!!!

World domination...no problem.

See you soon

Sal x

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