Sally's World

One things for sure, the rule book goes out of the window when you have a child with special needs.

It amazes me how different things are. When Jordan and Robyn went to secondary school it was easy really, so we traipsed round all the schools in our catchment area, weighed up all the pros and cons, talked to teachers, pupils, analysed the exam results… essentially it was pretty simple, and they’ve been very happy with the choices we all made…

So obviously with Deion, we got embroiled in a big fight about which school, because somehow the education department thought that having special needs meant you didn’t have as much right to choose, but we got our own way in the end…then there was the fight to get suitable toileting facilities, anyone would think I was asking for a space rocket, not simply suitable toileting facilities…I’d probably have more have more luck and less fuss getting my hands on a bloody space rocket….note to self, ring NASA!!!

Next came transport…think we’re almost there on that point…the school are being great and we are ironing out any other issues…relatively small regarding what happens in a fire drill, desk heights, classroom organisation, low coat hooks, games and PE…..all surmountable issues…

But here comes the bit I don’t get, the thing I fear we’ll never alter, and that’s ignorance. Now, when JJ and Robyn went off to secondary school, not a single person ever asked me if they would be taking exams when they left school…the question of them leaving with a decent education went without saying…it is expected no???

So explain to me why someone would ask me (with a scoff of derision no less) if I thought Deion would really get any GCSE’s.

I get Deion is different... $h!t, Deion gets he’s different…but since when did different mean stupid????

As parents, when your child has a disability, yes, you adjust your goals and expectations if you like…it’s not the first steps you crave, it’s a new electric wheelchair so that he can drive himself. Okay, its not football, but wheelchair basketball, we’ve been told the likelihood is that Deion wont be able to have children of his own…so we might look forward to the day he fosters or adopts a child, he may chose not to have children.

But we are blessed, and Deion has merely physical limitations, not academic ones…hence the fact he can attend a mainstream school, hence the fact he is so bright its scary, has a sarcastic/cheeky/okay, if I’m honest an evil streak to rival Dennis the Menace….why would we think he wont be taking exams…don’t all kids in mainstream school take exams…is it not what is expected????

So to the woman…who I am also sending this post to also, who works with children in special education, who is supposed to be helping and supporting us…quite frankly up yours!!! Is your child taking exams…what’s that?...no kids, oh, could have guessed that…you probably couldn’t raise a cat! I’m sure when Deion graduates from University…you’ll still be sat behind that desk, not having a clue about real life…

Deion knows he can do whatever he wants in life…the people that know and love him spend a lot of time and energy making sure he knows he has no limitations in life…so when someone, who should quite frankly know better, comes along and has the ability to undo all that work in one sentence…it makes me so mad I could spit…

Needless to say, we wont be having anything to do with this person in future…after all, I would like to see Deion graduate from college, instead of serving a prison sentence for murder!!!

And just for the record, that’s not a threat, I’m merely venting my anger and frustration at your incompetence, ignorance and stupidity!

Deion can go to the secondary school of his choice….yay! Suddenly all the phone calls, letters, care plans, arguing, demanding is all worth it.

The school is being adapted so that he will have suitable toileting facilities; it is all agreed, we are ecstatic. It probably seems silly to get so excited over something Deion should be entitled to anyway…but we all know being entitled to something does not guarantee it, doesn’t even make it likely….not here!

Of course not everyone is happy, I am being blamed for other projects in the borough getting shelved…all because I wouldn’t back down…you see I’m evil like that, fancy demanding a toilet for my son…oh no!!!


I am being blamed for a large part of the budget going on this toilet…but you know what, I don’t really care, its to like I’m only doing this for Deion, now many children with disabilities and/or incontinence issues will be able to attend this mainstream school, have more choice, more freedom and more dignity…

Education should have got it right the first time round, should have taken the right advice form the right people…then it wouldn’t have been a big fight or money from the precious budget.

All I know is we are happy because Deion is happy…now there is just transport issues….matrix funding and key workers to sort out… ding ding…round six!

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

I was looking forward to today. Deion’s school has an in-set day, so the two of us were going to have some quality time, a cosy day indoors playing games. Jordan and Robyn went of to school to cat calls of, “you’ve got school, suckers, I’m having a lay in.” But Deion told me to stop being mean!!!

So far, I’ve had my butt kicked at Connect Four, been annihilated at Black Jack and thrashed at Wii Tennis, I managed to scrape a win at Bowling, but only just.

So just to be mean, as Deion kept winning, I told him we had to do his homework..ha! Serves him right!

But now, I take it back everything I said about Robyn’s trigonometry. I have no problem being made to feel stupid when I don’t know the homework of a fourteen year old, I welcome it, it was certainly preferable to my ten year old asking me what a progressive pronoun was and being stuck for an answer…and me an author…how will I ever live it down.

Did we even learn this stuff at school????

So on to maths, I know I was good at maths, how hard can a ten year olds maths be right??? So give Deion a sum like, 1344-876 and he can do it in his head before I’ve even written the bloody thing down. And they do it so differently now, they don’t add from the units first and carry the tens like we learned. Kids nowadays can glance at the adding and subtraction problems, they start from the front and can get the answer at a glance.

We seem to be raising a whole generation of brain boxes, kids who can double as human calculators; it’s a conspiracy, devised to make parents feel stupid.

So now I’ve given in, I’m defeated, I’m letting him play some rubbish on the play station while I get a cup of tea and try to find some sort of adult learning, English and maths courses to enrol in!!!

Big sigh!

Sal xxxxx

Today, I would like to thank Lewisham social services. I want to thank them for the letter that landed on my doormat today. A letter addressed to Aaron no less. It was a form to fill in, asking him how he is finding their services now that he is a disabled adult and is no longer in full time education.

It is exactly what I needed, especially as it’s his birthday next week. I wasn’t feeling quite bad enough about having to spend his special day without him, so thank goodness for their incompetence!

How can they not possibly know?

Tactless, thoughtless, idiotic are just a few of the words that spring to mind, the rest aren’t fit to print. This needs to be addressed as it is distressing and unnecessary. There is a special needs data base, at least one, and all the relevant people, agencies and authorities have been informed of Aarons passing. Yet, somehow, the letter still got sent.

So I rang them and told them to get their act together. And lets hope they do because the next one I’ll be hand delivering to the person who sent it and I’m going to make them eat the bloody thing!!!

Ridiculous!

Today, I’m going to introduce you to my husband David.

Dave and I met over 20 years ago now, I was working behind the bar in a nightclub as a second job, and he was raving in the worst pair of shorts I’ve ever seen in my life…in his defence though…it was the eighties.

The kids still tease Dave for being stuck in the eighties because he recently bought roller skates in stead of roller blades…and Dave wasn’t too amused when the guy in the shop suggested some matching leg warmers, even though the kids thought it was hilarious.

Dave is laid back compared to my hyper. If we were both as frantic as me, the kids would probably be nervous wrecks. I joke about Dave being so laid back he’s horizontal, and I do on occasion have to check for a pulse…This however does not mean that Dave is not a high achiever. He worked in a job he was unhappy in for years as he’d never realised his dream of becoming a barrister. But when Aaron was busy fighting every day literally for survival, Dave realised he needed to settle less, and do more towards his own dreams. So he went to law school as an external student and got his law degree, and then his masters…all while doing a full time job. He had to give up work to sit the bar, then he got pupilage in a prestigious chambers in 2005.

So after eight years of hard work, Dave was called to the bar and became a fully fledged barrister. He now works in chambers and is a part time lecturer at a law school.

But that’s just a small part of who Dave is. Dave is an incredibly driven and strong person. While we were all falling apart after losing Aaron, he was the one who stood strong and held it all together. I’m not saying he didn’t...or doesn’t have his moments, but luckily they are only when I’m capable of being the strong one.

Dave is even more stubborn than me, even though he would never admit it in a million years. And he has a competitive streak that I have never seen matched. It doesn’t matter if its scrabble, football or a game of snakes and ladders, he the most unbearable winner and the worst loser…

Our children are our lives, and certainly our priority (when we’re not annihilating them at monopoly that is); we are trying to set good and strong examples for them and teach them that anything is achievable. So we work really hard, tell the kids that it’s important to achieve, and to get their education while it’s free!!! If we ever had to total the cost of Dave training late in life we’d probably slip into cardiac arrest!

If I had my choice, Dave and I would spend more quality time together. I know we had a recent weekend in Paris, the first time we’d been away together in 17 years. But in an ideal world, a few more hours to snuggle up on the sofa with a film and a glass of wine would be great.

Sal xxxxxxxxx

Forgive me if I slip into unconsciousness while writing this…but I almost passed out with the news that something may have been accomplished with regards to Deion’s secondary transfer.

The head teacher of our chosen school got in touch today to tell me that the change order for the special bathrooms, hoist and changing bed has been agreed. I want to take a moment to thank him and his staff for their support in this matter also!

THANK YOU!

I would have loved to hear it straight from education, especially as I spend about seven hours a day talking to them, I currently have more quality time with them than I do my husband at the moment. They must have known when I was on the phone to them yesterday!

Anyway, it’s been agreed, which is all that matters. The work will be carried out, and Deion will have everything in place with regards to toileting facilities in his new school.

I am quite relieved, I know its just one round of many…but it’s the biggest one in my opinion.

And all I had to do was go down to the education department and threaten to rip someone’s arms off…no, that’s a joke…I’m kidding, honestly, I am not prone to bouts of violence ever/hardly ever/only when seriously provoked…and only when its someone trying to deny the kids something. Treat me however you want…I couldn’t care less, but don’t treat my children badly, because I’m a tad, just a TAD! Overprotective!

Right, now all I need to do is sort out hours and level of support, hygiene staff, transport, physio care, occupational therapy, a scribe, equipment supply…. world peace, global warming!

I’m sure we’ll get there…eventually.

Grinning to the point of gloating.

Sal x

For those of you who don’t know how the system works (ha!...sorry, is supposed to work!); special needs children have educational statements, usually about a ten page document, that details their personal, physical and educational needs and it also determines the amount of money that goes with them to their school.

So of course, schools want the statements as detailed as possible so they get the required money to care for a child’s needs, and the education department want them as vague as possible so they don’t have to spend as much money on the child. This may sound harsh, but in my experience, it is also pretty accurate.

Deion’s ‘proposed amended statement’ for secondary transfer came in the post yesterday afternoon. And I was dismayed to say the least, that under ‘parental advice, input’ in the statement, it stated “no advice given.”

This is despite the fact that I made a ridiculously detailed (to the point of obsessional) care plan, which was colour coded, alphabetised and even contained photos of Deion being transferred in and out of his equipment… maybe I should have added the detailed video footage of the standing transfers after all!!!

It’s amazing. I spent hours doing this and made it so simple to follow, I would fully expect a four year old to go through it and be able to complete most aspects of Deion’s care without having to ask me a single thing.

It seems to have got lost…again, despite the fact that the first one was sent recorded delivery and the second one was hand delivered.

So, needless to say, not all the things that needed to be in the statement were in there. Luckily Deion’s primary school were their usual thorough and supportive selves and completed lots of info too…this was included.

This just makes me feel that professionals are listened to, doctors, consultants, physios, teachers, care assistants…no problem. But as I am just a mum!!! I guess they think I am not the person most qualified in every single way, about every single thing regarding Deion to give them advice…mmmm!

So after about thirty phone calls, it has now been decided that I will need to complete a care plan….give me strength, I explained I had done this TWICE! But to no avail, so I’ve been up half the night copying and reorganising another folder to simplify things for people who should know better.

Although they were also kind enough to inform me that home/school transport is no longer on the statements, this is something we have to appeal for later…”but not just you…all kids,” she said…”oh goody,” I replied, “us parents don’t have enough to do already, so if there’s something else you can leave off, and leave us to fight for at a later date…just to give us something to do in our quiet boring, easy going lives, then just let me know….”

And I’m sure they will think of a few things.

And briefly to the mum who e-mailed me yesterday… ‘NO! A school can not say no to a child based on physical disability alone.’ Send me more info if you like and I’ll help you look into it. But I think you know me well enough by now to know that I, for one wouldn’t take ‘no’ for an answer.

Take care, keep fighting, and let me know if I can help…

Sal 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

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

Today, I’d like you to meet Jordan. Jordan is fifteen years old, in his last year at secondary school. He’s just sat all his GCSE’s a year early, got all A’s, 2 B’s and is now moved onto the first part of his A levels. From a very early age, Jordan would join after school clubs and extra curricular statistics classes e.t.c. because “it’ll look good on my academic record mum.” To which I would reply “whose child are you?”

Jordan is as bright as a button, not that he always uses his powers for good as it were, he’s a bit too much of a whiz on the computer, and this has landed him in hot water a couple of times. And sometimes I worry that it comes a little too easily for him. Robyn puts in 120% to get her results; Jordan puts in about 80%. If he pushed himself he’d be off the charts. But I guess he is a 15 year old boy and there are more important things to think about, like playstation, music, girls, trainers and having the right logo on his tracksuit.

When Jordan was little, you couldn’t turn your back on him for a second, he’d be on the table/kitchen side/top of the wardrobe! (I wish that was an exaggeration, but its not). He has never had a sense of fear and I used to age about ten years every time we went to the park/playground/anywhere with trees. Actually, he gets his tree climbing ability form me, I’m an excellent tree climber, and pleased to say I have not lost this skill, good job too, as the cat knows how to get up them, but not back down!

Jordan’s going to be an architect, I think it’ll suit him; he knows what he wants at least. He did his work experience in an architect’s office, and loved it.

I’m dreading the next few years in so many ways, because it means the kids are going to need me less and start thinking about moving out. But I guess we can’t hang on to them forever, we just have to hope that we’ve equipped them with the right knowledge and skills to do so safely and productively. And as I watch Jordan practice his weird dance moves even as we speak, I think we’ve sadly failed!!!

Oh well!

Sal x

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 guys, back again...So a few people went onto the Heavens Special Child web site and asked me about Deion. It may not have been clear in the video, but be fair, we had a lot of info to get over in a short amount of time(and all the umm's and ermm's took up most of that!!). Deion is my youngest son and yes, he is also a wheelchair user, many people asked me if Deion has the same condition as Aaron, but he doesn't, it is completely unrelated.(What are the chances...I know).

Deion was born at 28 weeks and has cerebral palsy as a result. But don't go feeling sorry for him, he may be in a wheelchair, but he has a cheeky streak equal to none. And he has absolutely no qualms about using his disability to his full advantage. When his brother or sister get told to tidy their room or take their plate out, he is often heard muttering "sucker" under his breath.

We go bowling a lot as a family, and god forbid Deion beats you, as he will bellow, "you got beaten by someone in a wheelchair" at the top of his lungs...and believe me thats loud. And if you didn't feel bad enough getting your butt wooped by a ten year old!!!!

I guess it's not bad though, considering that when he was five days old, he had a brain hemmorage so extensive that the doctors told us he would never talk. I'm always telling Deion that I'm going to go back to those doctors and demand my money back. You can honestly never shut the child up!!! he has an opinion on everything and voices it loudly and often. but mostly he laughs about everything, and it's a real cheeky laugh too.

Despite his physical limitations, Deion goes to a mainstream school, is as bright as a button and has tons of friends. At the moment we are embroiled in a nice big fight with Lewisham Education about his secondary school transfer. They need some advice on what 'full inclusion' actually means.

But as many of you said in your e-mails, life with special needs kids often feels like a constant fight, if its not schools, it home adaptaions, transport or benefits. I have never quite got my head around why 'the powers that be' insist on making life more stressful than it already is...but hey, I stopped trying to apply logic to it all a long time ago.

I hope that I was able to answer your questions and my e-mail advice was helpful.

Several people were asking for more info on the dolphins, so I'll get back to you tomorrow with that.

Take care

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