Sally's World

Enthusiastic is the word best used to describe Deion's feeling for school, he's had a brilliant week.

The school have worked hard, got the balance just right, and the people they have hired for Deion gel really well with him. They are keeping in touch every day, I couldn't ask for more. The teachers have praised him, his helpers have laughed with him and Deion is relentless in making sure they know they support really bad soccer teams!

The older kids have told him what a cool wheelchair he has (it is cool!) and the lunch ladies have taken a shine to him, he seems to get an extraordinary amount of food, and still come home with lots of change!

Deion is worn out by the end of the day, but still can't wait to tell us about his adventures.

P.E. was a concern for me, but the coach has got the balance right too, Deion is a sort of mini coach, so he timed the kids doing the bleep tests. I think he may have been a little over zealous in his motivational technique, but I'll bet they ran faster lol!

My baby's growing up fast!

Don't worry, I don't mean my husband, although, that would be preferable to the heart wrenching agony I felt when Deion wheeled himself into his first day at secondary school.

I actually thought I was having a heart attack at one point, all the while Deion was saying "don't worry mum, I can handle it." I think I don't like realising I have to let go, and he's my baby, the youngest, the last one.... I don't like to believe I am not as needed as I think I am!

Deion had a great day, he looked so grown up, he made lots of new friends, reconnected with those from primary school. He was full of tales of having his own lift key, a classroom assistant that supports a 'like, totally, rubbish' football team and what he had for lunch.

It turns out that the nervous breakdown and the mild stroke I had were unwarranted.

The pictures make my heart melt, I am a proud mum....here's my 'not so' baby!!!

I was reflecting earlier at the difference of Deion going on to secondary school as opposed to Jordan and Robyn going.

When it was their turn, I stressed about making sure we had all the right uniform and stationary,and I worried about the size of the school and them getting lost because they were used to such a small primary school, but it struck me how different it was this time, how different the things I am scared of are!

While we were in the school outfitters and we were trying on Blazers, we had to consider different things, after all, Deion's going to be sitting in a wheelchair, the blazer has to be comfy for that, not too stiff, a bit longer so he can sit on it so it doesn't bunch up around him. We tried on 12 before we found a suitable one. It took me about a year to explain to the salesman that the trousers had to be slightly longer, as he sits down all day, therefore come up short, (he hates his socks showing).

The bag needs to be bigger and sit right on the wheelchair handles, he has to fit so much stuff in, his shoes need to be easy to take off and on so that his toileting care wont take longer than necessary.

I'll have to make a big pad delivery out of school hours so that he has all he needs and his school friends don't see and tease about 'nappies.'

I need to pick up the months menu to make sure he's eating what is manageable for him.

Of course, Deion wont have the option of taking the shortest route to each class as he has to go the accessible way, or via the elevator. We have to pick up his lift key

We have met the 4 people who will be responsible for all of Deion's personal care and toileting needs. We have met his one to one classroom assistant

The school have ordered the height adjustable tables for his wheelchair to sit under, re arranged every class so Deion can manoeuvre, ordered the hoists, changing beds, cabinets e.t.c

We even have the whole school to ourselves the day before everyone else starts so Deion and all the workers involved can get used to each other.

Then theres Jordan and Robyn's preparation

We walked into the school outfitters, said 'we'll have that, that, that and two of them and left!

Okay, so you know when I said it was all sorted, that Deion’s school was going to be adapted and ready…apparently, I lied, or more importantly, Lewisham lied to me. They are stalling, and not signing off on the works, even though they agreed to, the school agreed, the funds are there and allocated….what on earth is wrong with people…I am sick to death of fighting the system.

Now we have had to threaten to sue them….should it really be this hard? Should they not be trying to make life easier?

Another day on the phone!!!!

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!

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

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

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

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