Sally's World

Today, we have our first guest writer on sally’s world, my daughter Robyn.

As you know Trojan (http://trojansgallery.blogspot.com/) and I have been doing video blogs for a while, yesterday we talked about dyslexia with Robyn, who was diagnosed with dyslexia when she was seven years old. She was a natural, and I was very proud of how well she explained the ways in which her dyslexia affects her, and how she overcomes it.

“Hi, I’m Robyn, I’m sally’s daughter, my teachers told me I had dyslexia six years ago, I work really hard and read a lot to help me cope and keep up with my school work. Last night Mummy and Uncle Trojan asked me lots of questions about how I feel and how I cope, and if anyone has been horrible about my dyslexia. We videoed it so you can see us talking about it. I hope it will help other people who are finding it hard to cope. Mum says if you have any questions you can e-mail me to ask me on sally@heavensspecialchild.co.uk there are some really good websites too the British Dyslexia Society has lots of information it is on http://www.bdadyslexia.org.uk/ and Dyslexia Learning Success is on http://causesofdyslexia.com/ this is an excellent site and gives you lots of ideas. Please watch our video and tell us what you think. I liked doing it, I was a bit shy at first, but was okay when I got talking, and I want to help other people. Bye, love Robyn xxxxxx.”


So take a look and see for yourself, I think we have a star in the making.

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

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

I guess its time to properly introduce you to another member of the family. I know you’ve met Me, Aaron and Deion, so this is Robyn. She’s my fourteen year old daughter. Although she thinks she’s more like twenty four and recently tried to leave the house wearing lipstick…this gave Dave a taste of what’s to come and now he’s a nervous wreck. I think he wants to ground her until she’s thirty…I pity any poor boy Robyn tries to bring home.

Robyn is a sweet, kind thoughtful little girl, I expect that will all change later on in the teenage years and we’ll be clashing, screaming at each other and arguing about the length of her skirts and her unsuitable friends/boyfriends. But not yet. Now she’s still my sweet little girl.

A few months ago, Deion had a reading test at school, he improved 2 years worth of reading in just a year, the school gave him an award in assembly, he was so proud, he was bursting to tell me when he came in, we spoke about it all evening …But after Deion went to bed, Robyn told me she had been put in for her art GCSE two years early. I hugged her well done and asked her why on earth she hadn’t said anything before… “I didn’t want to steal Deion’s thunder,” she said. Her thoughtfulness actually made me prouder than the achievement in art, bless her heart.

Robyn is like a little mummy to all the babies in the family, and she was always like that with Aaron. I used to have to tell her to go out and play, remind her that I was the mummy. And quite frankly, no eleven year old should know how to suction, tube feed through a gastreostemy and adjust oxygen cylinders…but she wouldn’t be stopped. And Aaron adored her.

Robyn is doing extremely well at school, she has quite severe dyslexia, but she puts in 120% to make sure it’s not a problem, she is strong willed, determined and a high achiever (notice a pattern here with my children). Her parents’ evenings are an absolute pleasure and I try…honestly I really try!! not to look smug while the parents on the table next to us are being told negative things about their kids, and Robyn’s teachers are telling me she’s an angel, thoughtful, kind, hard working, diligent…the list goes on…it's almost impossible not to be a little smug.

Robyn wants to be a lawyer and possibly a judge when she grows up, and I have no doubt in my mind she will achieve whatever she sets her mind to.

I’m not saying she doesn’t have her moments, at times her and Jordan argue over the most ridiculous things, and if someone broke in and ransacked her room, she’d never know, I show her where the washing basket is every day, but her room still ends up resembling a jumble sale. But those things don’t matter, all the things that matter, she has in abundance. Lets hope it stays that way for as long as possible!!

Take care

Sally and Robyn xxxx

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