Sally's World

Deion has come up with a new slogan, he's very proud of himself, he's been wearing 'Wheelchair Demon' and 'Wicked on Wheels' for a while, and he asked me if he could have a 'skills on Wheels' one.

So here it is, what do you think? This is the first time we've used the gold and silver lettering too.

Lots of people have seen it and ordered it, I love the feedback we get from kids wearing these t-shirts, they are really making a statement, its fabulous.

The more read the blog is, the more e-mails I get asking me about the T-shirts, and most of the comments have been fantastic, however, there were two people who asked me if by putting slogans on the shirts, it is setting our kids apart. Sorry to burst your bubble, but as much as it shouldn't be the case, it's the wheelchair that sets them apart. The slogans are just a great way of making people realise, that you don't get to stare and be derogatory, just because our kids are different.

If most kids and adults were stared at or teased, they would be able to have their say, not everyone can do that. And as a parent or carer, it would be easy to get involved in fights on a daily basis about this. So instead, the slogans get the message across without having to get into a confrontation. Many kids are gaining confidence from wearing them. 100% of the time, they stop people staring, or actually make them realise they were staring in the first place.

So far the comments from kids and parents wearing the shirts have been amazing. They are raising awareness, making people realise that 'it's rude to stare', that even if a child can't tell you, they notice if you are being derogatory. And remember, they aren't just for kids, one of our best sellers is actually a bright pink hoodie saying 'wheelchair babe', and the majority of them are sold to elderly ladies in wheelchairs...fantastic. Of course a few elderly gentlemen have caught on and sales of 'chicks dig the chair' in adult sizes are on the rise. Hmmm!

A couple of people also asked if they have special fastenings for easy fitting. All I can say is, that we don't dress differently just because we know we are going to be sitting down all day, so we don't provide those for kids just because they are going to be sitting own all day. These types of clothes, would set them apart in a less positive way. What we want are ordinary, affordable clothes in ordinary colours, just with great slogans to reflect their personalities. I know that specialist clothing may be more necessary as people get older, adn its personal choice, but its not something my son would want. He wants trendy jeans just like his friends.

My son's favourite slogan is 'my other wheelchairs a porsche', not only does it make people smile, but it makes them realise that he isn't insecure about his disability. He has no choice but to embrace it, and he thinks everyone else should too.

I hope this answers your questions, if not then let me know.

Sal x

For those of you who follow the blogs in any way, you’ll know exactly who Trojan is. For those of you who are brand new…

Trojan is a close friend of mine, and he is the one behind the whole blogging idea. We work well together because he has all the technical know how and I just have plenty to say! Trojan strongly believes in what I do with the t-shirts and the charity, and will be getting more and more involved in both those things as time goes on.

For as long as I’ve known Trojan, he has been into taking photos; he always has his camera with him and snaps away all the time. This is great for recording those memories for those of us who always forget our own cameras, or forget to use the bloody thing even if we do have it.

Of course, it’s also a bit of a pain in the arse because Trojan has a love of ‘natural shots.’ Which roughly translates into him catching people in embarrassing moments or while they are yawning or stuffing food in their mouths. And if you want to get up to anything slightly illegal/immoral, forget it if your with Trojan! It will recorded in glorious, immortal Technicolor!


I’m not going to pretend I always got it, often he’d be snapping away and I’d be all like “erm...Trojan, it’s a gate!” to which he’d just smile and continue with shots of wildlife/flowers/buildings/lampposts. But once I saw the photos and what he’d done with them, I got it. He has a great eye, and seems to be able to capture art through the camera lens. Something I admire because about 80% of the shots I take are of headless people, my own thumb or look like they are taken at midnight...in a snow storm…in gale force winds!

To show off some of his brilliant photos Trojan has a blog. It’s called Trojans Corner, and not only are the photos of the places he’s travelled brilliant, it’s a great way to find out more about him and those places. Its fun and informative, he talks about many of the things that interest him, and he has many interests and strong views and is certainly worth getting to know.


So take a look at his blog on http://trojansgallery.blogspot.com/

Take care

Sal xxx

Today, I thought I’d tell you what we have achieved so far in such a short space of time. The video and written blogs have been raising awareness, and lots of people are e-mailing to say they are finding them very helpful. One of our main aims was to be able to reach out to people in need, and that seems to be working, so we are very proud.

The T-shirt and book sales are up by over 40% which means we have been able to put more money towards the charity.

As well as the UK, we have got readers and viewers from the USA, Spain, Greece, India, Saudi Arabia, Belize, St Lucia, Grenada, Ghana and Gambia.

What would be really good, is if you felt like you could tell your stories too, tell others what you’ve been through and how you dealt with it and coped. It’s really therapeutic, I promise you.

It would be helpful to get other peoples takes on things, for me also. So far you’ve just heard my point of view and how we’ve coped as a family, but we all have different ways of doing things, there are no rules, no rights and wrongs, but if one thing you say helps someone else, then it will be worth it.

Also it would be very interesting to see how having special needs and disabilities affects people who live in other countries with regards to education, equipment, hospital care, physio care…. the list goes on.

So if you feel you are able to share you stories or experiences, then please e-mail, or comment here. It would be great to get a sort of support network going where we can all help each other and give advice on what we know, and get advice on what we still need to learn. You can comment anonymously if you like, so you don’t have to feel any pressure.

So please feel free, and be as honest as you like (I think!!!).

Look forward to hearing from you.

Sal & Trojan 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

Hi there. Well, i'm still laughing after completing my first ever video blog with Trojan. Okay, so it turns out I say 'Ermm' alot, and 'Ummm' and to the surprise of anyone who knows me, I often seem to get lost for words. But I think we get the message across. If nothing else you all know more about me after watching it (mainly my inability to speak properly).

We'll be back next month with a new video blog, we'll let you know what's been going on in the meantime and hopefully I will have answered lots of questions and been able to help a few of you.

I'll be writing a weekly update on any news and events and generaly what's been going on, I'm always in the middle of a battle with something to do with one of the kids. Secondary School transfers with full inclussion is the latest in a long line of fights to get my boys what they need and are entitled too.

So look out for the weekly blog and we'll 'see' you again next month in a new video blog, in the mean time I'll be working on speaking without saying 'ermm' three hundred times a minute.

I hope some of you will be logging on to the web-sites, taking a look at Aaron's books and maybe buying a t-shirt or two for someone you know.

Take a look on http://www.youtube.com/sallyannestephenson

Hi, I'm Sally, i live in London with my husband and four children. My eldest son passed away after a long fight with a muscle wasting disease just over two years ago. My goal is to carry on in life in the way Aaron taught us. Aaron lived life to the full and had many lessons to teach us all about love, laughter and having our say. After Aaron passed away, i found myself at the computer for hours on end writing about our lives together, this was published exactly a year to the day of Aaron's passing, an accident, we think not!