Sally's World

I’ve noticed that there is a trend in the e-mails I’m receiving from some of the mums who are following the blogs. That is that many seem to be angry that it is their child who was born with a disability. While I totally understand it, and know it is a perfectly natural reaction to finding out your child has special needs, you cannot allow it to affect your lives.

You have been given the most amazing opportunity. You get to take care of a most precious child, an extra special child. You need to feel blessed and grateful for that. Whilst it is a very different life than many parents and families will experience, it is incredibly rewarding and fulfilling as long as you embrace it wholeheartedly.

So by all means get angry, but direct it at the right people (which definitely is not yourself as some mums feel). My anger is not at having children with disabilities, it is at the system that makes getting my kids what they need so hard. So that anger can be productive, it is the fight and determination that means you will achieve what you need to for yourself and your child.

You cannot let the anger get to you, because it will affect the life you have with your child. If anger is the focus, fun and laughter won’t be, not all the time. And what matters, especially to kids, is fun and laughter. Live life, make it fun, make it count and make sure there are no regrets and ‘should haves’ when you look back.

Of course, you may not see it that same way as I do, not everyone has my views and ways of coping, and I respect that. So please, please feel free to comment and give me your opinion. Also, if I can give you any advice on the practical issues surrounding disability, then you just need to ask, if I can’t help, I bet I know someone who can.

So, word for the day…Gratitude!

Sal xx

I just thought I’d let you know that I’ve been abusing the postman again. Those of you who read my salsa story know that I already horrified the poor man when he accidentally caught me practicing my routine.

Well after today, I’d be surprised if we get any mail at all, he’s going to be demanding danger money to come anywhere near my front door I should think.

But I promise, it was an accident. The cat has been driving me mad you see, she’s pregnant, and is forever meowing at the door to go out. When she wants to come back in, she nudges scrapes at the door so I hear it. So I let her out for the twentieth time today and turned to go back to the kitchen.

How was I to know that it was the postman making scraping noises at the door and not the cat? So I can’t really be held responsible for the fact that I yelled “OH P***S OFF, YOU’RE GETTING ON MY BLOODY NERVES,” at the postman instead of the cat.

Of course, as soon as the letters plopped onto the doormat, I realised my mistake and opened the door to apologise, but all I got was a back view of him as he walked off up the road at speed. He was really going some as well considering the heavy mail bag. I yelled “sorry, I thought you were the cat,” after him, but I don’t think he heard. And this just made the man across the road stare at me quizzically.

I’ll expect the men in white coats to turn up at the door at some point today then. Am I the only one that things like this happen to???

Maybe a cat flap is a good idea after all!!!

Big sigh…Sal x

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

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

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

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

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

A couple of friends have told me that the saying goodbye passage I posted may make people think that the book is all like that and a bit heavy to get through. So they encouraged me to post another passage that reflects the lighter side of the book. The kids chose this one because its their favourite!

But, Please, dont judge me until you've been there. xxxx

"Aaron never lost his sense of humour. And we never felt more confident than when he was up to mischief…. Many people made the mistake of thinking Aaron wasn’t intelligent, we couldn’t seem to get through to some people that, being in a wheelchair didn’t make him stupid. I was trying to think of an example when one of the kids reminded me of, “The nights of the whistle.”

My Mum and Dad in their infinite wisdom; bought Aaron a set of musical instruments, complete with drum, tambourine and a nice loud whistle. Honestly I think they were using my own children to get back at me for all the noise and grief I caused them over the years! I think they actually scour the shops looking for the loudest toys they can find. Come to think of it, they do seem to have a kind of smug smile on their faces when they hand my kids their presents!

So one night there was an almighty loud whistle coming from Aaron’s room; I sat bolt upright and stumbled into his room to take it off of him. But, I couldn’t find it, I looked everywhere, I presumed it had fallen down the back of the bed, and was lost. Fine, ‘I’ll find it tomorrow,’ I thought and went back to bed. As soon as I got back to sleep, he blew it again. In I went again, but I could not find this bloody whistle.

This went on every night for a week, I emptied everything out of his room, I looked under his mattress, in every book, I thoroughly checked about his person, even in his nappy, it was nowhere to be found. I was completely baffled.

When it got to the point that I was so tired I was a zombie like; I turned detective, I didn’t do the whole raincoat, magnifying glass thing, but probably would have if I’d thought of it at the time. I put Aaron to bed, made the footstep noises as if I’d gone into my room...oh yeah, I’m good. Then I crept back on my hands and knees to wait outside his door.

I waited for three hours. Even to me this sounds a tad mad, but you have to appreciate how tired I was. If I didn’t find that whistle I was going to go mad, so it was for the good of the family that I sat crouched outside his bedroom door that night.

Then it happened, he blew the whistle! I burst in his room before he had chance to hide it “POLICE FREEZE!” I yelled, “CAUGHT YOU!” The look on Aarons face was a picture, a caught red handed look across his cute little features. “I’m not falling for the cute look Sucker!” okay so I may have got carried away at this point!

Then I found out where he’d been hiding his whistle. He’d picked at the stitching a furry dolphin toy he had until he’d made a little hole, he’d even made it underneath the fin, so you couldn’t see it at first glance. He was blowing the whistle, then poking it in this hole. What a bugger! How ingenious! Even I had underestimated him this time.

Aaron thought it was hilarious; Dave and the kids were helpless with laughter. They told everyone they could think of, and I became the butt of everyone’s jokes for ages! When I’d tell anyone about it, Aaron would sit there with this little angelic look on his face… “Who me?” the look said, with a flutter of the eyelashes.

Aaron loved driving me completely mad with little things like that. Believe me this is just one small example of absolutely hundreds of tricks that Aaron has played on me over the years. How anyone could dare suggest he was unintelligent was obviously very misguided."

One of my daughters friends e-mailed me last night to ask how she can help with fundraising. I was touched and very proud of her. I guess Trojan and I are getting something right, it's lovely to know that we are inspiring people to think of others. Although she may regret her kind offer in time...I fully intend to rope her right in now.

We have done alot of fund raising in the past. We started small with jumble sales, raffles and auctions, then we quickly progressed onto head shaving (not a good look for me),nor was it the right time of year...note to self...only shave head while residing in a tropical climate. We did some bungee jumping, which frightened the life out of my poor mum, and we reigned it in a bit with the occasional pub crawl...all in the name of a good cause of course, the hardships we endure. Next time though we'll rethink the St Trinians outfits.

There are tons of things other people can do to help, a friend of ours did a the great north run...madness if you ask me...I'd rather throw myself off of a crane from 300 feet up in the air attached to nothing more than a glorified elastic band...oh yeah, did that! In fact did it twice it was so much fun.

I have now decided to do a parachute jump, and I can't wait, my mum's not quite so happy about it though. She says I give her grey hairs, which is not entirely fair, my brothers and sisters have to take at least some of the responsibility on that one. Although, to be fair, I did promise no more bungee jumps...and as far as I'm concerned I'm keeping that promise...sky diving...much better. Dave is desperately trying to find comprehensive life insurance that covers jumping out of a plane from 20,000 feet up...good luck with that one Dave. Even the kids questions on what will happen should my parachute fail to open, aren't putting me off.

We have lots of ideas for future fundraising events. Via the blogs and You Tube we aim to keep you posted, and of course the charity site will be up and running soon with all upcoming events listed. There are always things you can do to help, even if it's just spreading the word. We have been overwhelmed so far by the response and the compassion of others. We rope in family and friends all the time,and are eternally grateful for their unwavering support, but it is often the random act of kindness from a stranger that amazes us.

If you want to know of ways you can help, then please e-mail me. And I promise, I'm not expecting anyone else to jump out of airplanes or to get straight down the barbers for a number one. Unless you really want to that is. I bet I get inundated with people offering to do pub crawls though!!!

Take care

Sal x

Okay, nothing heavy or of very much 'special needs' consequence today. Today I just wanted to talk about childhood hero's. Mine was Wonderwoman, I wanted to be her so badly, she was my all time heroine. I did grow out of it....about last September I think, but her lessons will stay with me forever.

Me and my brothers used to drive my mum mad, "Batman could easily take Wonderwoman in a fight," my brother would yell at me. "No way, he hasn't even got special powers," I'd scream back. Then my other brother would chip in with, "what about superman, he could take 'em both." We'd glare at him. "Who asked you anyway," we'd snap, not really being able to deny he had a point. My mum would have to jump in a break up the fight...but it was usually time for me to go and pick up the kids from school by then anyway!!!

But I have a very real hero of my own and, today I just want to acknowledge her. I never told her that when I was growing up, I was too busy rebelling and putting my own stamp on the world to stop and appreciate her. While I was raving about Wonderwoman leaping tall buildings in a single bound, I never realised that my mum was doing the equivalent of that every single day for me. okay, so she never had the cool costume, not practical for grocery shopping I suppose, but that didn't matter.

Until I became a mum I had no clue what being a mum meant. All those years, I never acknowledged my mum and all she does, how fiercely protective she's always been. Now I get it, I really get it. When we become mum's, we all become Wonderwomen in our own little way. We become someone elses hero and we have to step up to the plate. Oh we may not have the glossy hair, the six foot legs, the ten inch waist or bracelets that deflect bullets. But we will hunt down anyone who tries to hurt or deprive those we love, and we make sure justice is done. That's sort of the same.

My mum's certainly taught me how I want my kids to think of me and look up to me, and I hope one day my daughter feels that way about me, then I'll know I have got it right. So this blog is to acknowledge all the mums like me, my sisters, my mum, my friends who go the extra mile for their kids. As someone very important to me said the other day, we're so busy doing what needs to be done, we don't stop to look at all we do and all we achieve.

So I'm acknowledging it now, and letting you know you're not alone, there are plenty of us if you need to reach out.

Sal xxx

People ask me time and time again how I find the energy to do what I do. I'm often asked how I have the strength to fight over and over again just to get the things the boys need, the things the boys are entitled to.

Well, you've heard of extreme sports, what I do I guess is extreme parenting. I go after what my kids need and I don't stop until they get it. Some liken me to a German manned torpedo, personally I think 'cruise missile' sounds far nicer! But really I just prefer to look at it as standing up for my rights and the rights of my kids. Because if I don't, who else will?

And it is a fight. Sadly nothing is offered, even the most basic things like home adaptations, communication aids and much needed equipment don't come easily. You have to fight for it all. But I stopped being surprised about that a long time ago, if my boys need anything, I just pull on my big red gloves, ring the bell, ding ding ding, round one, two, three....whatever it takes.

You know, I think that half the time the powers that be just give me what I want to shut me up. But I refuse to be intimidated, I refuse to back down when I know we are in the right, I refuse to let someone sitting behind a desk, with no clue about our life dictate our future. And it's that same fighting/stubborn streak that Aaron inherited, the same one that meant he refused to give up and stick around longer than anyone ever thought was possible.

So I will continue to fight, for one thing, it says a lot about who I am, about the strength of character I want to pass on to my kids and it means my kids will want for nothing. And once I win one fight, I move right on to the next, passing on what I've learnt to other mums like me, who in turn pass it on to people they know. So slowly families are getting to know their rights, getting more for their kids and having more productive lives.

So it's the fight that gives me the energy, its the winning of those fights that continue to give me strength and a sense of achievement. So keep fighting, and once you start winning you have the strength and energy to do more and more. You can't let them win!!!

World domination...no problem.

See you soon

Sal x

As many of you know, Trojan and I started Salsa lessons a few weeks ago. It's a lot of fun and great for fitness judging by my aching legs. I'm proud to say that we moved up to the improver's from beginners last night, and we kept up...mostly. The bandages should come off Trojans feet this week and the broken toe should heal within the month, he may even dance again. No, I'm kidding, I barely trod on any ones toes...not hard anyway.

Salsa is something I've wanted to learn for a really long time, I've just never had the nerve to go by myself, and of course going with Dave would be hard because it raises the issue of finding child care. So when Trojan casually mentioned that he too wouldn't mind learning, I jumped at the chance and had it arranged before he could back out.

It's a lot of fun, the club is fairly small, the instructors break it all down and make it easy for the ryhtmically challenged like myself and everyone is very friendly and patient.

I've really got a lot out of it, for one thing, it is something that's just for me, and its something for me that's actually out of the house. And after just four weeks, the kids have stopped saying, "but where are you going mummy, why can't we come, daddy's not cooking the dinner is he?" and accept that I'm having 2 hours away from them for me.

I've found myself singing the songs as I drive along, and playing the music during the day as I dance around the living room while I do my housework. I have forgotten myself a couple of times and caught the neighbours looking curiously in the window at me. Note to self...do not practice provocative salsa moves while washing the net curtains... And I frightened the life out of the postman today as I flung open the front door and salsa'd down the path to take the rubbish out, well, how was I to know he was on his way up the path. I'm sure he thought I expected him to throw in a couple of reverse turns as we passed.

So I guess I'm learning that hobbies and time for myself are a good thing, I'm learning that I have no need to feel guilty if I'm not doing something for the kids every waking minute. And I'm in a great mood today,the postman may be scarred for life, but I'm happy. And the happier I am, the more I have to give to Dave and the kids, its a win, win.

Take care

Sal x

I'm quite glad the last couple of blogs have been more light hearted in nature, because this one isn't.

Since we've started these blogs I've been getting e-mails asking me about that moment when we knew we'd lost Aaron. And although I've generally been applying these blogs to the e-mails I've been recieving, this is a subject I seem to have avoided. So today I decided to bite the bullet and insert the passage out of Aaron's book which describes that moment.This isn't one for the light hearted among us, so it's completely your choice whether to read on or not.

Sal x

“I was in a perfectly good mood as I walked into Aaron’s room to get my morning cuddle; I was still humming the Postman Pat theme tune that was stuck in my head thanks to Aaron’s three o’clock viewing programming. Aaron was laying on his front asleep, I didn’t think too much of it except to say that he never normally slept on his front, I asked him what he was doing and I rolled him over.

This is an image that will be ingrained in my heart and mind for the rest of my life, Aaron was pale and his breathing shallow, he tried to look at me but he couldn’t seem to open his eyelids properly. I screamed for Dave and screamed for the phone, I dialled 999, I looked at Dave and I could see the fear in his eyes.

The lady on the end of the phone was talking to me, telling me how to do CPR, I was breathing into Aarons mouth for two breaths, then fifteen compressions on his chest, breathe again, fifteen more compressions, it could only have been two minutes but it felt like a lifetime. I thought I could feel a pulse, but it was really weak.

The ambulance people burst in and took over, they put him on the floor and were working on him. We were helpless, staying out of the way because we couldn’t do anything, they were attaching pads to his chest to shock him, they tried to intubate him but couldn’t get the tube down. It was mad, all the equipment, all the bleeping, we were all crying and telling Aaron how much we loved him, how he could do it, he was strong, not to leave us. Somewhere in the middle of it, Dave rang his brother John to come to watch the kids so we could go to the hospital.

The ambulance man picked Aaron up and carried him to the ambulance; I just numbly followed them out, because above all else, I knew that I had to be with him. They were pumping his chest and breathing for him all the way to the hospital. I think I was in a daze by then, this wasn’t real, this wasn’t what Aaron did, he was playing, he’d wake up any minute now, he just wanted a cool ride with the lights flashing.

When we got to the hospital, the back doors were flung open and we all leapt out, then they swung the stretcher and Aaron out and we all hit the pavement running.

We burst into the hospital to a waiting team of doctors, they wanted me to go to a room with a nurse, “No,” I shouted, and they knew I meant it. The doctors were shocking Aarons heart, giving him adrenalin, they were asking about time, I could do nothing but watch them try and save him, where was Dave?, I needed Dave.

Dave walked into the room and I saw Robyn walking behind him, he was saying she wouldn’t let him leave the house without her, she was like that, she had even packed Aaron a little bag, bless her heart. The nurse led Robyn away and I just collapsed in Dave’s arms, the doctors were saying there was nothing more they could do, I could hear someone screaming “NO, NO,” over and over again, then I realised that it was me!

The doctors and nurses all moved away from the bed, I grabbed Aaron and gathered him up in my arms, this couldn’t be right, he just looked like he was sleeping soundly, he was still warm, surely this wasn’t it. How was I ever going to have the strength to let him go? I just clung on to him, Dave one side, me the other, both sobbing, both feeling as helpless as each other, it was just way too awful to contemplate.

The doctors were talking, they needed to take some of Aaron’s blood and urine to help them see exactly what had happened, we said o.k. I gently laid Aaron on the bed and let them put their arms round me to guide me away from him. Then we were led off into a little room, where the nurse was already sitting with Robyn. Robyn stared at me, eyes wide, shaking her head ‘no,’ I sat down and hugged her tight, and she started screaming too. How on earth do you explain this to children, it is harder than you could ever imagine. I kept telling her what a brilliant sister she was; Aaron couldn’t have wished for a better sister.

Dave Rang John and told him to bring the children, they had to say goodbye to their big brother; we knew John would need to see him too. I think then we all just sat there in a state of shock. As we walked out of that room to go back to Aaron, John walked in to the hospital, I threw myself at him, and he was sobbing too, what would we all do without Aaron?

The kid’s looked so little and lost standing there, they had tears running down their faces, us and John too, and I hadn’t a clue what to say. Jordan just kept saying over and over how “he can’t be gone” he kept repeating how he’d only been reading a book to him the day before and couldn’t quite let it all sink in, he wasn’t the only one. Deion looked so little so frightened.”

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

I know you're probably expecting a blog on something deep and meaningful today, maybe even helpful...or hopeful, well in that case, I'm about to disappoint you.

I thought I'd share my morning with you instead.

I've just spent an agonising hour trying to convince a doctor that the numerous scrapes and bruises that currently cover my body are not the result of me being a battered wife, but that I am actually nothing more than a very clumsy woman who has been roped into playing basketball.

'So why the bruises?' you may ask...Ha! not if you knew me.

I'm a tad clumsy, and if you substitute the word 'tad,' for 'totally,' then we'd be getting close. I spend so much time on my arse or flat on my face when we play that I actually came home with a footprint on my back last week. The slight black eye is due to my tendency to catch the ball with my face A LOT!

Now basketball may not be the obvious choice for someone as clumsy as me you might think, and I agree totally. But that didn't help me much when I got roped into it by one of Deion's over zealous (and basketball able) teachers.

We've found a wonderful wheelchair basketball team for Deion. The coach is a wheelchair user himself and plays for England, he has a great manner with the kids and they all love him. So because I was there hanging around waiting for Deion every week anyway, I apparently had no choice but to join in with the mums team.

'How bad can it be?' I thought, 'good for fitness, just throw the ball a couple of times, great.' Ha! I was very wrong. We may just be a group of mums, but we get quite competitive as it happens. The trainings fine, we're all smiles and 'how are the kids?' but split us into teams and tell us its a match and everything changes. No more Mrs Nice Guy!

The match looks more like a cross between a rugby match and WWF. And for some reason unfathomable to me, I seem to be right in the middle of every scrum/pale driver manoeuvre/five woman pile up going!

So yes, I may be a little battered, I may have a few bruises, but my goodness, I really enjoy the basketball. We laugh a lot as we pick each other up off the floor, and we are all prepared mums should the need to stem a bloody nose arise (it hasn't yet surprisingly). I enjoy the adult company, the female comaraderie and the vending machine does the yummiest hot chocolate.

Although I have to do is put up with Deions constant jibes about how rubbish I am compared to how fabulous he is. I really need to think of a way to bring that child out of his shell!!!

I invited the doctor to come along and see this phenomenon for himself, he declined, and although he eventually believed me about the bruises, I'm pretty sure he made a note of it on his computer.

Note to self, skip basketball when doctors appointment imminent.

Sal x

A couple of people have asked me on earth they are supposed to deal with losing their child. Two were mothers who's children have recently passed away, four were mothers who have children with terminal illnesses.

Well, the truth is, you don't, not all the time. There are no rules about how you react, what you need to do to get through it and there are certainly no time limits. The most overused saying of all time has to be 'time heals everything'. Not true, time just brings acceptance.

After Aaron passed away, I went into denial for a long time, I'd pretend he was at school and he was coming home, I think my heart would have broken if I knew that I would never see him again. So your brain lets little bits in at a time I think, and with time passing, all that happens is that you cannot avoid the inevitable truth.

What I had to do was learn to think differently, I had to realise that I would see Aaron again one day, just not here on earth, and I had to realise that as a child that was part of me, he will always be a part of me. I carry him with me in my heart wherever I go. He was the person who made me who I am today, so how can he not be with me every step I take.

So, no, for me, time hasn't healed and I can't imagine it ever will, I will feel the loss every day for the rest of my life. But it is also that sense of loss that keeps me strong and determined. What I have realised, is that I have had to learn to live with it, accept that I'll have a different life now, but also be grateful that its the life Aaron shaped for me.

You know we never really have to say goodbye, we just carry our child differently to the way we know, and are used to. And we have to realise they are watching over us and will be waiting for us when its our time to go.

So my advice would be; for those who still have their children, live life while you can, appreciate and cherish every moment, make it count. And for those who have lost their children, hang on to your memories and the love you feel, no-one can take those things away. There's no time for regret and recrimination, think of what your child would want for you. I know Aaron would want us happy and laughing...or up to some sort of mischief!

But you do have to find your own way to cope, and sadly no-one can tell you what that is. My way of coping is in all the things I do every day to pass on a legacy for Aaron. I have three children to raise into adulthood, three children looking to me for guidance on how to cope, and I need to set an example for them, create something possitive for them to hang on to. Because, I certianly wasn't the only person who lost Aaron, he is missed by hundreds of people.

We all just shre one common thing, we are all grateful we knew him.

Take care

Sally and Aaron xxxx

As promised/threatened, Trojan and I got together again yesterday and recorded our second video blog. After the first one we thought we had it totally under control, we were going to be so much more organised. It was planned, we had our topic, we even had set questions. So it should have gone smoothly...you'd think!

Okay so rehearsing...bad idea! Because I already knew the question Trojan was about to ask me, he barely got the "So how does..." out, before I'd finished asking the question for him, told him what a good question it was (even though he''d actually never got to ask it) and answered the bloody thing while he sat there looking stunned.

So Trojan thought he could reign me in and threw in a couple of unplanned questions, "What about you Sally?" he asked when he was supposed to say "How do you find time for you Sally?" Ha, no such luck "What about me?" I said with a grin, and I think if Trojan could have slapped me and gotten away with it, he would have done.

The first take was over 25 minutes long though, we needed to cut it down considerably. So the next take we tried to fit in all the same stuff in a third of the time, which only meant you would have had to record it and play it at half speed to even understand us...and who knew it was possible to talk at six hundred words a minute?

So in the end, we took our picture off the screen, binned the questions, hit record and had a chat about how disability effects things like accessibility and education and how we I find time for myself and my marriage, and it was fine.

I think it has to be off the cuff to be natural, its the little mistakes that make us watchable we think, of course, you may disagree!

We feel that it will be a natural progression to become more polished (but not too much) with time. The opening sequence, as well as bringing a tear to my eye made a big difference, and I think helps you to get to know us more. Of course, I can't take credit for that or any of this, Trojans the brains behind it all, I just waffle on about me and my kids, he does all the technical stuff and even came up with the idea. So Blame him, not me!!!

Seriously though, it's been wonderful already, we've been able to reach out to lots of people and judging from your comments, given hope to lots of families too. Imagine what we can achieve in time!

So keep watching, keep sending e-mails and comments and we look forward to seeing you again soon.

Take care


Trojan and Sally xxx



http://www.youtube.com/sallyannestephenson

I know from your comments that many of you are wondering how I have any time for myself or my marriage. Well, we just make time, not lots of it, its not always possible, but some.

Recently it was my husband, Dave's 40th birthday, and as much as he wanted to pretend it wasn't happening, (he still thinks he's 21! acts like it too mostly!!!)I wanted to mark the occasion in a special way, so I surprised him with a weekend in Paris.

It was a big step for both of us; for me because it was going to be the first time we were going away from the kids in 17 years, and for Dave because we weren't taking a lap top/playsation/widescreen TV/sky sports away with us.

Although I think he was glad to get away from the kids relentless teasing about zimmer frames, denture cream, hip replacements and the amount of grey hairs he was suddenly sprouting. They are ruthless...especially Deion! Deion offered to lend him his wheelchair for the trip, and then took it back as Daddy's middle age spread would mean he'd probably get stuck in it and need to have it surgically removed. Nice!

It was the first time either of us had ever been to Paris, and it was wonderful. We spent some quality time together concentrating on us. It was nice to not have to think about someone else for a change, and great to have someone cook for me instead of the other way round. Of course, after about 12 hours I was missing the kids, and when I rang them to say goodnight, you'd think we'd been away for a month.

But it was a way of recharging our batteries and concentrating on each other for a change. I know its not possible for everyone to do, and I know whole weekends will be few and far between. But it made me realise that we need some time on a regular basis.

After all, I'm not just a Mum, I'm a woman and a wife too. Its easy to forget that when I'm up to my eyeballs in a six loads of washing, school runs, hospital appointments and fixing the brakes on Deions wheelchair!!!

Speak to you soon

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

Hi there, I know I said I would write this weekly, but apparently, I lied and here I am less than a day later.

I had 16 e-mails yesterday through the Heaven's Special Child site, all from people who'd seen the video and blog, all asking me about Aaron. Well there was one guy who asked me for a date, which only led me to question his eyesight and/or the level of alcohol in his blood stream, I know I didn't look my best okay!!!!

A couple of e-mails were from mum's with children who have terminal illnesses, a few were from mums and dad's, and mostly they were people asking about Aaron and the books. So I thought I'd write a bit about him here for people to see.

What to say about Aaron. Aaron is the most incredible person I have ever met in my life. He didn't just meet life head on, he wrestled it to the ground and beat it into submission, and he never NEVER let his physical limitations hold him back. He did everything. For a child who couldn't talk, he was surprisingly forceful in getting his own way, he'd point to the place or activity of interest, then point to his own chest and say 'me now mum' in his own way.

At first it was tennis, football, karate...no problem, I was a little worried about archery (as was the instructor who nearly got shot in the backside). I barely hesitated when he wanted to go rock climbing and abseiling. White water rafting, I was less sure about and voiced my concerns to Aaron, but he gave me a look that sent me scurrying off to the computer to find the tamest version of this sport that I could. When we decided to swim with dolphins in the warm waters of the Bahamas, I was surprisingly keen (shocking) and had it arranged before anyone could say 'Bahama's, no Sal, I said bananas.'

When he wanted to visit Lapland however, I was horrified, 'me now mum' he pointed. 'But its really cold Aaron, you can't keep warm as it is,' I said. So Aaron signed Father Christmas...'me now mum.' By now I was stamping my feet, rubbing my arms and making bbrrrrr noises for emphasis. 'but its minus 40 there Aaron, are you mad?' so Aaron looked at me and raised an eyebrow. I sighed and rang the travel agent. Yep, mad!

But the truth is, we went willingly on Aaron's adventures, and if we didn't he would have dragged us bodily anyway!

Now, I'm not going to pretend it was all fun and laughter, anyone with a special needs child knows it is hard work and at times you reach a level of tiredness you didn't know even existed. Aaron had a syndrome that not only meant he was as strong as an ox, he didn't feel pain, self injured and had violent outbursts. So he smashed windows, we fitted toughened glass, and when he ripped his radiator off the wall, we fixed it with reinforced steel fixings, and when he threw the TV at me, hey, it was our fault for not bolting it down. He broke my nose more than once, knocked me out a few times and I lost a couple of teeth...but I have more teeth, and hair grows back I reminded myself every time Aaron was holding a clump of mine in his pudgy little first.

But then, Aaron had a way of saying sorry with a hug and a gentle stroke of your face and you could forgive him anything. Because after all, there was nothing to forgive. Even when he decided it was time to leave us. I think he believed he had taught us all the lessons we needed and his little body had fought so long. He was ready to go.

Oh, I'll not pretend I didn't have a few tantrums at the unfairness of it all, after all I'm only human (don't tell anyone), and a mum who had lost her baby boy. But mostly when I think of Aaron I'm grateful. Grateful he chose me to be his mum, grateful he was who he is and grateful beyond words that I got to spend 14 incredible years with him. No-one can take that away, and he made me into the mum/wife/daughter/sister/friend/person I am today. The thought of him fills me with love, and that goes for anyone who knew him, because he embodied the true meaning of the word.

So thank you for your e-mails, I am always happy to talk/boast/gush about Aaron.

I welcome your comments.

See you soon

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!