Sally's World

You will not believe what happened to us the other day...actually...sadly, you probably will. We were not allowed in a shop because Deion may have broken something while in his wheelchair...apparently, kids in electric chairs are NOT ALLOWED. Pushable ones, and buggies are okay, but electric chairs are too much of a risk in the breakable goods department.

Okay,I'll tell you what I wanted to break, and it wasn't anything they were selling in the shop!!!

"So let me get this straight?" I asked in something just below roar level! "Disabled people are not allowed in your store."

"Oh yes, of course they are," said 'thick as shit' store assistant, "just not kids in electric chairs!"

Well,I don't need to go on about the small argument that ensued, and there's certainly no need to repeat any of the threats made (who me?)...

But the manager was called, we were assured that it IS NOT store policy to keep out electric chairs, and the 'thick as shit' assistant got it wrong. Apologies were made, I resisted the urge to tell Deion to drive around at top speed like demolition derby and break everything he could (very understanding of us I think!)

And I know what will happen next, we'll get a letter of apology from head office and some store vouchers, I know this, because it happened once before in another store. I don't want the bloody store vouchers, I want to be able to go shopping with my son and not be turned away because he's in a wheelchair...simple...you'd think! The vouchers will be rolled up and returned with a suggestion of where they should put them!

Okay, I know we are moving ahead, and things are improving...but come on...can we get there a bit quicker please, people are being treated like second/third class citizens here! GGRRRRR!

Okay, we're stranded, Deion's wheelchair broke down yesterday....the repair man came out today to fix it, after lots of chin rubbing, lots of head shaking, muttering about parts and components, he announced he couldn't fix it, he had to order parts. So he's taken it away, as he didn't have the right tools.

I guess mechanics are mechanics!



I am now panicking about Deion having it for return to school....

I would just like to send my commiserations to the traffic warden who missed out on a commission today. It’s a good job I forgot to lock the car door; otherwise I wouldn’t have seen the attempted delivery of an unfair parking ticket.

A traffic warden was standing on the curb when I parked in a disabled bay, set the badge to the appropriate time, placed it on the dashboard and got out. The traffic warden saw me unload Deion in his wheelchair, saw me put the ramp back up and watched as we began to walk away. Luckily we had to return after a few steps as I realised that I forgot to lock the doors.

I was surprised when I saw the warden punching my number plate into his little machine of his…the same machine I was tempted to take off of him and place somewhere safe, somewhere that would have required a trip to the hospital to have it surgically removed.

I asked him what he thought he was doing, he ignored me, I asked him louder and pointed to the badge. “It’s upside down,” he said in a bored tone. Actually the badge was sideways, but surely that’s not the point. The expiry date, the time and the number were all clearly visible, even if the poor traffic warden would have had to perform the hard task of tilting his head 30 degrees to the left to check that. I guess it was unreasonable for me to expect such a thing.

The truth is, I didn’t know that the badge had to be upright; I thought as long as you could see it, that was good enough.

Anyway, I turned it so that it was perfectly upright, took the names of a couple of passers by who had stopped to gawk in amazement at the tactless traffic warden just in case I ended up with a ticket in the post anyway. And I think he decided to cut his losses and he walked/stalked off up the road in search of another four wheeled victim.

It would be interesting to know though just how many tickets have been issued in this way, and if people are paying them.

How ridiculous. I drive a HUGE adapted vehicle with a bloody great electric wheelchair lift, there are about thirty stickers warning anyone not to park within 8 feet to allow the ramp deployment and wheelchair access. I have enough to think about without having to become paranoid that my disabled badge is at an exact ninety degree angle to the dash board should some idiot come along and slap a ticket on just for the hell of it.

Is it any wonder that Traffic wardens are some of the most hated people on earth, be honest we all put their job title right up there with serial killers, armed robbers and politicians, I’ve never met a nice one and I don’t think I’ve heard anything nice ever said about one.

Aarrghhh!

Sal xxx

p.s That does say Traffic Wardens in the title by the way…what were you thinking? Traffic Warden is enough of a swear word, I didn’t need to elaborate!

Well, they let us home from the hospital today, I’m a little concerned that is was more to do with the fact that Deion was constantly demanding food and chatting the ears off the nurses than that he was actually alert enough from the anaesthetic to come home.

I was up late last night packing his bag…and don’t think I’m talking about pyjamas, reading books and slippers, I’m talking about chicken drumsticks, Doritos, chocolate chip cookies, Haribo and a Satsuma…the Satsuma was for me.

Sadly, I underestimated, and in the last four hours, he still needed two hospital meals, one of the nurses lunches and a constant supply of drinks…with chipped ice if you don’t mind, not the cubed kind!

I’m not sure he was totally ‘with it’ as we left the ward and he drove his chair down to the car park. After taking out a potted plant, a chair and a doctor, I realised, he might not be fit to drive after all.

Is driving a wheelchair under the influence the same thing as drink driving, I’m not sure. It may seem less dangerous, but if you’ve ever been run over by an electric wheelchair, you know it’s no joke!

But in all seriousness, Deion was a star, he hated the starving part, but he was great when they do the blood tests and put the drip in and stuff. He had a muscle biopsy, a lumbar puncture, and an arterial blood test. All went well, and apart from feeling a bit sore, he is fine. He’s gone to bed now and I expect he’ll be using his sore back as shamelessly as he can, and we’ll all be charging around catering to his every need all weekend.

I also had to explain to Jordan, Robyn and Dave that Deion was not halucinating, as they presumed on hearing about it. And we did actually see a storm trooper in the lift at the hospital. It was a little surreal, I got a fit of the giggles, and the stormtrooper looked at me as if to say 'grow up' which made it worse. But he didn't shoot me!!! so that was okay!

We’ll be getting the test results in a week or two, so fingers crossed for good news.

And I just want to thank everyone for your messages of support. Family and friends obviously texted, phone, e-mailed and sent their love. But we also had many good luck messages from people who only know us through the blogs. So thank you, we are touched and everyone’s messages of support were much appreciated.

I need to go and get some rest now, Deion’s going to have me on my toes tomorrow.

Take care

Sally and Deion (Demon Driver) xxx

Deion had the wheelchair clinic today to get some adaptations on his chair. As usual, it reminded me of the summer that Aaron and Deion were finally at the top of the list for electric wheelchairs...

All I could think of was the freedom they could have, the mobility…then, hang on a minute, think of the crushed toes, the bruised shins, the hospital visits, the wrecked furniture!

Okay, those things weren’t as important as independence, so we took the boys for a test drive, they were mad lunatics as we would expect, a bit of competitiveness got thrown in to cause a bit of damage, and there you go.

When we strapped Aaron into his chair it was so funny. The guy who does all the adjustments and safety stuff on the chairs hadn’t lowered the speed of Aaron’s yet, so no sooner was Aaron strapped in, than he was out the door like a shot.“QUICK…AFTER HIM,” we all yelled as we flew out the door and into the corridor after him. People were flinging themselves into doorways to get out of Aaron’s way, pot plants were flying.

In the end I did some sort of flying rugby tackle, grabbed Aaron’s hand and prised it off the controls. We went back in the room, someone got me some plasters for my elbows and knees, and the wheelchair guy said that it was probably best if we lowered the speed on Aaron’s chair a bit….YOU THINK!

The electric chairs were ready a few weeks later; the boys had to pass a road safety test first to make sure they wouldn’t be dangerous on the road…o.k.! Not that they would be going anywhere alone anyway. At my request, they didn’t programme them very fast, after all, I had to keep up with them. I had visions of me running up the road behind the boys, arms waving, yelling ‘STOP!’ as they drove off into the distance.

To be fair to Aaron and Deion, these chairs are a lot harder to control than you think, they react so quickly to the slightest movement on the joy stick, and the boys did really well in them, they were weaving in and out of cones, reversing round corners, they were careful, hardly ran anyone over and caused minimum damage.

When we got home, I explained to Jordan and Robyn that these chairs were not toys. They were not to go in them, or try them. I did not want to see anyone else in the chairs except for Aaron and Deion. “ARE WE ALL AGREED?” I said. “Yes Mummy,” they chorused.

If only Jordan and Robyn hadn’t run out of the living room a while later shouting “DADDY’S FALLEN OUT OF AARON’S CHAIR.” Honestly, what hope have I got of teaching the kids anything? I walked in the living room, my ‘stern mummy look’ firmly on my face, Dave looked a bit sheepish, and the kids were all falling about laughing. “I just told the kids that they are not toys, what on earth are you doing?” I asked Dave. His excuse, would you believe, was that he wasn’t actually in the room when I explained to the children not to play in the chairs.

There was me lecturing the kids when I should have been telling the bloody biggest kid of all.

Deion reminded me of that today, so I thought I’d share it with you. The electric chairs really do make a difference to the lives of children like Aaron and Deion. Deion may be a bit of a demon driver, but his smile at being able to get about by himself says it all.

See you soon. Drive carefully!

Sally and Deion xxx

Back again so soon!

I know this is something that many of you will understand. The pure frustration of people parking unnecessarily in disabled spaces, just so they don't have too far to walk...well it is cold out I guess, bless...

But the word 'frustration' didn't come close to the ignorance I experienced last night. I was simply picking Jordan and Robyn up from karate...(let me get a little boast in here very quickly, they have been going to karate for 5 years, have really committed to it and got their black belts a few months ago)...So there I was innocently picking my Little ninjas up, I pulled into the car park, which had lots of empty spaces in case your wondering. But the wholly inadequate row of disabled parking spaces was completely filled with tiny sports cars and the odd Ford Mondeo.

I had no choice but to pull in front of two of them to wait for the kids, I got out of the car so they could see me (I couldn't actually go in and get them as I couldn't park). I know I said there were other spaces, but seeing as I drive a big green bus with roughly the same dimensions of a Sherpa tank, an ordinary space is no good to me.

All would have been well, if the owner of one of the cars hadn't come out and raised his voice at me...I kid you not! He actually shouted at me for blocking him in...he even bandied the B word about....and as anyone who knows me will tell you...it's NOT my favourite word.

I stayed calm, after all Deion was in the car and the kids would be out any minute, I calmly told him to shut up. Okay, so I may have mentioned the incredible level of his ignorance, also his total lack of intelligence and brain cells, his inconsideration and general rudeness and idiocy might have been mentioned ...but I was calm as I insulted...sorry, I mean as I stood up for myself.

He yelled again, added the F word this time, and I was getting angry by now. "I'm so sorry," I said loudly, "was my big disabled vehicle stopping you from getting your little, clearly non disabled vehicle out of the DISABLED ONLY parking bay."

Goodness me, all he'd had to do was come out and politely ask me to move the bloody van, apologise even for parking there, was that really too much to ask? Then came a whole other level of ignorance..."but you're not disabled," he snapped looking me up and down. "No, I'm not disabled," I replied through gritted teeth. Not something he'd be able to say ever again if he threw the B word out there again.

Well, I calmly got back in the car, the kids came out from their karate lesson, they also jumped in the car and off we went. They were none the wiser and I was just spitting mad. Mostly that I hadn't got to run the bastard over!

Why do people do this? how on earth can someone take one of these spaces that are so important, and not only that, actually be so rude and ignorant when someone who genuinely needed the space comes along. Not an ounce of shame. Its a measure of our society in a way, and one of the things that need to be tackled head on.

It's not the first time this sort of thing has happened to me, it certainly wont be the last, and I'd put money on anyone with a disabled badge having gone through the same thing at least once.

Lets hope that in the future all car parks will provide better parking, that people will show more consideration and less ignorance...oh and while we're asking the impossible, lets end world hunger and solve the issues of world peace.

See you later

Sal x

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