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!!!

As I mentioned, we've spent the last few weeks getting organised for the imminent return to school, we've been to the school outfitters, the stationers, every shoe shop within a twenty mile radius, we've sewn on badges, labels, paired socks, sharpened pencils, packed bags, trimmed hair, organised timetables....

Of course, goes without saying Deions special bathroom, toilet chair, changing table, hoists, slings, tables, care workers, key workers, classroom assistants, storage, fire evacu chairs, care plan, physio plan, O.T. plan, is all in place (the usual!!!)

But we are ready, two days to go and they are all abandoning me again... mixed emotions for me...I shall spend the first hour wandering around the house enjoying peace and quiet, then I shall clean and scrub for the next three, then I shall start missing them and counting down to four o clock, where they will all stampede through the house like a herd of elephants, or in Deion's case a demon driver....then I shall start counting down the hours until they leave for school again the next morning.

Hard to please...who me???

We had to go back to the school outfitters for one more thing today, and I think I did something silly...but for the right reason (I think!!!) When I was paying, the proprietor said that he was going to give me a discount for Deion.... now, I know what your thinking, "keep your mouth shut, take the discount..." but not me, before I knew it my mouth had overridden my brain (AGAIN!!!) and said 'WHY?'

The guy probably thought he was being nice, but it smacked of pity, no-one else got money off, does a wheelchair entitle you to discount in any other store....ermmm...no!

In my defense, if I hadn't asked, Deion would have. Its hards treating him the same as everyone else is it...big sigh!

I'm a proud mum, Jordan passed all his exam's (seventeen SEVENTEEN!!!) All A's apart from a couple of B's and one C (German). He got an A star in Chemistry....

Huge sigh of relief and pride!

Well done J xxxxxxx

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!

Deion goes to Perrymount school, they had the kids writing poetry, each line the first of a school letter. This was too excellent not to share.

Playing with my friends
Even in a wheelchair
Running walking,
Really doesn't matter
You are just like me
Me, I'm just like you
Only difference is I'M FASTER!!
Unity through disability
No different from my friends
Thats what my school teaches me.

Made me laugh and cry at the same time...and its so much better than his last poem, which was

"Beans, beans good for the heart, the more you eat, the more you fart!!!!!"

Did you have cycling proficiency tests at school? You know the week, where every day a group of people came in to the school, gave you hints on riding and manoeuvring, then took you out on the road to make sure you knew all about road safety…you even get a certificate, which comes in handy when you want to prove to your parents that you are old enough and responsible enough to go out on the road without them….of course being brought home by the local policewoman for stunt riding in the town centre negates it all, but oh well!!! (one of my brothers not me)

So Deion’s school this week are doing just this, and Deion can join in, but only because Deion has a specially adapted tricycle, it is ultra cool, with Harley style handlebars, special pedals with ankle straps to hold his feet in and a special body brace and harness on top of the saddle. He loves it, it gets his legs moving and it means he can join in with everyone else.

But then I realised, there are two other kids in wheelchairs, who can’t join in, because they haven’t got a bike/tricycle…of course, they are ultra expensive to buy, we fund raised and got the variety club to help with Deion’s, but it wasn’t easy, there is a waiting list, there’s forms and criteria, and as with everything else it means a contribution. Not everyone has it, not now a days, so there are kids missing out on the usual stuff, stuff we all take for granted.

I was talking to Trojan (Trojans corner) and we were discussing how Deion is at that age now where he is realising he can’t do what his friends can. It breaks my heart to think of him having to look on while his friends do all the things he wishes he could. At least this is one thing he can do. And he is thoroughly enjoying it, I’m so proud of him, he’s coming home with his legs aching but a big grin on his face….what more can I ask.

A good laugh is always nice

An elementary school class started a class project to make planters to take home to their parents.
They wanted to have a plant in it that was easy to take care of, so they decided to use cactus plants.

The students were given green-ware pottery planters in the shape of clowns which they painted with glaze.

The clown planters were professionally fired at a
class outing so they could see the process.

It was great fun!
They planted cactus seeds in the finished planters
and they grew nicely, but unfortunately, the children were not allowed to take them home.

The cactus plants were removed and small ivy
replaced them and the children were then allowed
to take them home instead.


The teacher said cactus seemed like a good idea
at the time!
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Todays smile!

SCHOOL DAY

The telephone rings in the principal's office at a school.

"Hello, this is Dunn Elementary," answers the principal.

"Hi. Jimmy won't be able to come to school all next week," replies the voice.

"Well, what seems to be the problem with him?" asks the principal.

"We are all going on a family vacation," says the voice, "I hope it is all right."

"I guess that would be fine," says the principal. "May I ask who is calling?"

"Sure. This is my father!"

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

We got a letter home form Robyn’s school today. Now I realise, that for many parents this would send a chill through their hearts and they would close their eyes for a moment before opening it to read what their son/daughter had been up to, all at the same time as picturing the grounding/punishment they would be dishing out.

Not for us though, Robyn often gets letters home telling us that she’s done well in a test or handed in an exceptional piece of homework. This one was congratulating us because one of Robyn’s teachers has nominated her for ‘pupil of the half term’ for her exceptional attitude to learning, and her consistently excellent quality of class and homework.

So we are a very proud mummy and daddy today. We always are, but this is proper ‘gloat at parents evening/to all our friends and family’ stuff.

Robyn reads these blogs, so this is to say, “Well done Robyn, we are very, very proud of you, keep up the hard work. And if play your cards right, I bet you can wrap daddy round your little finger and get something really cool…as long as its not too short, too grown up or in the shape of make-up!!!!”

Bursting with pride

Sal x

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

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 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