Sally's World

If you know anyone who has a wheelchair, and you want some stickers or number plates, then let me know. Deion and his Friends love theirs and I send samples to my t-shirt customers, they are great, and I have loads...so let me know and I'll stick (sorry couldn't resist) some in the post.

These are incredible, and something I'm looking into for Deion, as you know I hate the thought of him missing out on anything just becasue he's confined to a chair, and one of these will mean we can do more together as a family. Of course, they look totally cool too. I was touched by this families story and how they didn't let disability stop them doing what they loved as a family, wonderful example to set for thier kids too, truly inspirational.

7 years ago life as the Sodens knew it took a turn. Liz and Brad were involved in an accident after their tire blew near Parker, Arizona and the car went flying. Liz broke her back and doctors told her she would never walk again. Prior to that day, Liz had big plans. She was a school bus driver and was working to join the sheriff's department. Now everything was different.

What didn't change, however, was the Soden's love of outdoors. Liz and Brad, together, have 5 kids and the 7 of them liked to camp. But before Liz was the "do-er," and now she could do nothing. They would sit her down near the campfire and she would watch. She felt useless and it drove her to tears. In 2002 the Sodens were stay in a cabin in the woods, to their surprise a herd of elk came walking through there camp. The kids having never seen an elk before, woke up and rushed outside. Liz got in her power chair and wanted to see the elk too. As she went outside the elk had moved on about 100 yards and you could not see them through the dense trees. As they started walking closer they had to keep stopping to help Liz get her power chair unstuck from the soft dirt surrounding the cabin. By the time Brad and Liz could get through the trees, the elk had gone. It was at that moment Brad felt compelled to act. "I wanted her to have no obstacles," he says, "we look at it as just ‘cause you're disabled doesn't mean you can't have a good time." Brad stepped into his garage to work on a solution that would enable his wife to go where no other wheel chair bound person had gone before. People scoffed, Brad was a plumber and a fireman, how could he come up with a powerful, motorized wheel chair? But somehow Liz knew her husband would do it. Two years later, he did.

To read more go to http://images.google.co.uk/imgres?imgurl=http://www.tankchair.com/img/img2.jpg&imgrefurl=http://www.tankchair.com/about.htm&usg=__uX9Dlg874UIdgBcVmFaRHb2CGgg=&h=363&w=360&sz=149&hl=en&start=3&tbnid=7qrG1bh1YtXz3M:&tbnh=121&tbnw=120&prev=/images%3Fq%3Dall%2Bterrain%2Bwheelchairs%26gbv%3D2%26hl%3Den%26sa%3DG

Deion has been made captain of his wheelchair basketball team. So I thought I'd take some photos of him and his team mates in action to mark the momentus occasion.

Go Deion, Go Deion, Go Deion!!!!

He is very proud of himself. And quite rightly so.

Their Coach is a really nice guy called Steve, who plays in the England Wheelchair basketball team, he's so great with the kids, they all love him to bits.

Obviously there are a whole different set of rules and plays...

Here are a few pictures of them completing a set play, You can't tell, but Deion is yelling his head off at about a billion decibels in eerrmmmmm...'encouragement' here!!

Apparently, that is one of his most important duties as captain!

Deions really committed now, he goes every Saturday morning and has an absolutely brilliant time.

Clubs are so important for all kids, I am a huge fan of structured activities... it's such an important part of a child social development and social life, I hate Deion having to miss out. It's hard to find good clubs that are wheelchair friendly, let alone wheelchair based as it were.

Of course there are a few extra issues, there are more than the usual amount of hospital appointments and stays among the team, and for the more fragile kids, more illness, but the club goes ahead no matter whether there are two or twelve kids.

Its also a great excuse for the mums to sit down for an hour with a coffee!!!

What do you say to your child when he asks you when he’ll be able to walk?

How do you explain to an eleven year old wheelchair user that he won’t ever be able to play football with his friends or for his favourite club?

Then what do you say when he asks what’s the point in doing all the exercises then?

We’ve just been doing Deion’s physiotherapy exercises, about half an hour into the stretches; Deion asked me when they were going to start working.

I told him they were already working, its these exercises that make it easy for him to sit up straight, to take his weight a little when we transfer him from his wheelchair or equipment, it’s the exercises that make him comfortable, not tight, pain free. I told him the exercises are building his muscles to make him strong, strong so he could stand up and use a walking frame.

Of course, Deion wasn’t impressed; he wanted to know when he was going to be walking by himself.

Certainly a heartbreaking moment.


I wondered for a moment if perhaps we’ve done Deion an injustice, we’ve been so busy telling him that his disability won’t stop him doing anything, we’ve been so busy telling him he can achieve anything he wants; I guess he thought that the exercises were working towards far more than just building enough strength to do standing transfers, to sit up straight and use his left arm a bit more.

I have been told by professionals in the past, that I raise Deion’s hopes too high, but surely, to do any less would be encouraging him to settle.

Of course Deion works hard, and we push him as hard as he allows, he has a special walking frame which he can propel himself around in, he can pull himself to stand for a few seconds holding onto a bar, and if you are holding him up just right, he can take a few shaky steps.

I guess you never know if you’re doing the right thing, its not like there’s a manual that comes with being a parent!


But we teach the kids to be the best they can, and whatever that is, is fine, as long as they don’t sell themselves short. Surely aiming high is the way to go?

So I’ve told Deion that he has to work towards what he wants, if he gets a little closer, a little stronger each day, then who can tell where he will end up?

He is now contemplating what I said, and when he’s ready he’ll want to talk about it.

I’m not exactly sure what I’m going to say to Deion about all of this when he brings it up again, but I guess I’ll make it up as I go along as usual…because that’s life…and Deion will take it on board and make up his own mind anyway!


xxxxxx

I don’t know about you, but I often moan about equipment and wheelchairs being so bloody boring. We want colours and style, so when someone sent me the name of this company ‘colours in motion’ I thought I'd take a look…they are a company specialising in really cool chairs…the sports chairs are like nothing I’ve seen before, take a look if you’re interested.

They do a big range, for all abilities. Here is an example of just one of their chairs. The suspension looks great.
This is how wheelchairs should look.

http://www.colourswheelchair.com/idx_vision.htm

I would like to hunt down the person who invented the Disability Living Allowance forms. Then I would like to lock them in a room and make them write ten million lines, something to the effect of, “I will not ask endless, inane questions over and over again.”

I have just spent the last three hours filling in Deion’s DLA forms…and as you may have noticed, I’m not all that impressed about it.

Deion has cerebral Palsy, its not curable, its not going to go away. Barring a miracle he isn’t going to suddenly leap from his wheelchair and announce he can walk. As much as we wish it would happen. And if it did, I can assure you I would ring the DLA people and gladly tell them we no longer needed it. But I still have to fill in the forms. Can’t they just send a single page form to ask if anything’s changed, a phone call even…no, too simple. Even better, if a child has an illness that cannot improve, just leave them alone.

I think they make it difficult on purpose, they must do…I have just answered the same question, asked in four different ways…“does you child need to be changed in the night, and if so how many times, and how minutes does this take, and how many nights per week it is needed?” now, sorry to say, I don’t time this to the second, nor do I time how long it takes me to reposition him in the night, get his pyjamas on or change his sheets should they need it. And NO, I don’t always know how many times I get up in the night, it is often a blur. And when am I even counting from, a normal person’s bedtime, or my bedtime???

The forms are quite frankly ridiculous, they want to know how long things take to the minute, not taking into account that the time for everything varies continually depending on so many things. They are kind enough to say you can estimate it…thank goodness, otherwise we might feel we need to stand with a stop watch trying to improve our times when flushing gastro tubes or changing nappies!

I understand people abuse the system at times and I understand they need details, but proof of a disability, and what it entails should be enough for them to work out the rest. I bet I could ask a dozen questions and get the relevant information. And I wouldn’t ask someone how long it takes to cut up their child’s food, simply saying a child needs assistance at meal times should be enough.

These endless forms need to be simplified. Yes, proof from doctors about a disability, we expect to have to provide. But the rest of it is endless, time consuming, and frustrating. Contrary to what people may think, spelling out every single aspect of our child’s disability over and over again in the minutest detail isn’t all that nice. Even though Deion is a wheelchair user, the forms still require me to fill in the parts that say, ‘no’ he cannot walk one step, ten yards, a hundred yards or further, ‘no’ he cannot get in and out of the bath and ‘no’ cannot go upstairs unaided. Hence the wheelchair people!!!

And sadly, they make it just as hard for you to stop claiming DLA…

When Aaron passed away, I phoned them to inform them, and they wanted proof, I asked her if she was joking, but she said no, and that they wouldn’t stop paying unless I sent proof. I offered to send a signed letter, but it wasn’t enough, they wanted the death certificate, the original no less. I refused to send this, and told her that I was happy for them to continue paying the DLA in that case…and I did put it in writing. Funnily enough, they did manage to figure out how to stop the money without the adequate paperwork.

Every time I fill in the DLA forms, I send them back with a short letter explaining my views, and I have no doubt it goes straight in the trash, maybe if more people did complain, they might take some notice. It wouldn’t even take that long to revise the forms to make them ‘friendlier’ and think of the money they would save…and think of the benefits to the environment, not only could they halve the size of the 40+ page form at least…they could also do away with the extra bulky booklet that tells you how to fill in the form in the first place. If it was simplified, they wouldn’t need a booklet! And quite frankly the booklet just makes it more confusing than ever.

This is a conversation I’ve had with many of my friends, and we all put in out little letter of complaint every time we return our forms, so perhaps you’d like to join us, you never know it might just help. It certainly makes you feel less passive about it I promise.

Take care

Sal xxx

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

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