Sally's World

I cannot believe that I have actually written 500 posts. Okay, okay, some some weren't mine, some were e-mails or quotes or videos that I couldn't resist sharing. But 500 times I have clicked on that publish button and something that says something about me is out there on the world wide web.

Looking back, what makes me smile is how different my blog is to what I expected.

Originally, I was going to do a weekly update, talking about life as a parent with special needs children, about how to live with the loss of a child...I thought I was going to be giving support and advice to other parents like me.

And to a certain degree I think I have, sharing information is the best way to deal with many aspects of special needs and disability. But I have received just as much information back.

But what I didn't expect was to get into it and write about everything and anything that's on my mind, and what is even more amazing is the love and support I have received from my fellow bloggers. I didn't expect to love reading about the lives of people from all over the world, I didn't expect to be able to relate quite so much.

I feel less alone, I have an outlet, I can share the little things that make me laugh (or cry), things that otherwise go unsaid. I can have a bad day, rant, scream, cry, swear, and all I get back is support.

My biggest thanks has to be to Trojan of Trojan's Corner, he is the one that believed in me and what I had to say enough to encourage me to blog in the first place.

Here's to the next 500 if you can stand me for that long!!!!

Thank you everyone for your support, for the messages/cards/e-mails/comments sent in honour of Aaron. I gained so much strength from your words.

I sent a big red heart balloon up to Aaron yesterday (red was his favourite colour).

We had a balloon release on the day we celebrated his life, it was incredible. No-one wore black, and we didn’t have flowers, we had balloons, and seeing literally hundreds of balloons of all his favourite characters, colours and of course dolphins float up into the sky, was breath taking. I’m sure some people though it was a little mad, with his white horse drawn carriage, his casket hand painted with dolphins, everyone in their brightest clothes and craziest hats (another thing he loved…mad hats), and dozens of cars following with balloons hanging out the windows…but he would have loved that. We even finished the night with fireworks, a huge dolphin shaped Aaron which stopped traffic and caused chaos!!! Perfect.

And for those of you who didn’t know Aaron you are right, he is an incredible child, and an amazing spirit.

I don’t know if you all know but I did write a book about Aaron and our lives together, the fights, the struggles, the love, the laughter, the madness!!!

It started off as just me sitting at the computer for hours on end because I couldn't sleep and writing everything down, it was as if I was terrified to forget the tiniest thing about our lives together..and it just grew, and the more people that read it and were inspired, or laughed, the more I realised it was a way of leaving a legacy for Aaron. He taught us so many lessons, there was a chance for him to teach more and more people.

If you would like to know more about Aaron and what we all went through, then please let me know, I’d be more than happy to send you a copy of Aaron’s book. Although it may be hard to get through in places, I can promise it will still inspire, and still make you laugh in places. Aaron’s spirit shines through and really teaches us all something about love and determination!


You can e-mail me through my profile, I look forward to hearing from you.

Here are a few or Aaron's favourite hats...

The Jester (perfect for Aaron)..not everyone can pull off a hat like this!

AH, not quite a hat...but Aaron tried it on for size anyway!

His absolute favourite..Aaron the Viking, this always drew a few looks as cars pulled along side us!

He even fashioned a few of his own!

A more sophisticated look!

The sad loss of David Cameron’s six year old son Ivan has been all over the news and papers since he passed away on Wednesday morning. When I hear something like this I just feel sick, panicky almost. And I guess it’s just because I know what the family has to go through.

Before Aaron passed away, I was always saddened on hearing of someone passing, especially when that person was a child, but I know I didn’t feel it as deeply as I do now.

When Aaron passed away, we were touched, and even surprised by the amount of support we had, and support from strangers too, friends of friends, or people we hardly knew. So many people who had also experienced losing a child were offering their support. It moved us beyond words.

It all makes sense to me now. As a parent who has lost a child, I feel the pain of parents like David and Samantha Cameron. I want to reach out and say something to ease their pain, which is even more bizarre in a way, because, I know for a fact that nothing anyone says at the moment will ease that pain.

I guess all I know is, that although losing a child is the hardest thing they will ever have to go through in their entire lives, it is something they can survive, even though it may not seem like it now. And no, time will not heal, but it will bring them acceptance. They have to accept that their lives will be different, and that their time with their son no less precious just because he is not physically with them now.

I know their will be some feelings of guilt at whether they did enough, gave their son a happy enough life, some anger at the loss, anger that everything else, and everyone else seems to be carrying on a normal life, and certainly some numbness at times, because I think that’s how the body copes, you can’t possibly feel it all at once, because your heart and mind could never take it.

They are now also realising that their loss is a very physical pain, that is something I never knew before, I never knew that the pain in your heart is real, tangible, I always imagined that it was an emotional pain only.

What they will learn with time though, is that their lives have to carry on and grow around the memory of their son. For a long time I felt that in letting go of all the grief and the anger, I was somehow letting go of Aaron. But I know that would be making him crazy as he watched me struggle with that. So all the love and memory, all the special stuff, is all there, life has just grown around it making it less of a focus for us all. I will miss Aaron every minute of every day, I will ache for him at times, I will cry and rant at times too. But I would never go back and change a minute; I can never regret the amazing adventure of our lives together. David, Samantha and their children too will realise this in time, and I hope they get there soon. But grief is not something you can time, or put conditions on, there are no rules, no rights and wrongs.

I have no regrets, and I'm sure Aaron is as proud of us as we are of him. I hope the Camerons' feel the same.

Sleep tight little angel, god bless!

Thank you for your e-mails and comments on the ‘be careful what you wish for blog.’ Mostly people were supportive of what I said, but one or two people either disagreed or misunderstood me. This is fine of course; I don’t expect everyone to agree with me, I just am giving my own opinion. In fact, I’d worry if everyone agreed; it’s certainly not what I’m used to indoors!



I would just like to clarify two things:

Firstly, I do not think that a child has to be a wheelchair user to qualify for any special needs services. Not at all, many of the special needs children I know are not wheelchair users. I am fully aware of the huge array of special needs that do not affect mobility. So I can assure you this is not what I meant at all. All families who have children with any kind of special needs are entitled to all the services available.

Secondly, no, I didn’t literally mean that any parent who claims to have a special needs child when they don’t deserves a disabled child. I also don’t think having a disabled child should have such negative connotations either; I believe we should be grateful for all our children and recognise their perfection regardless of special needs. And once again, it’s not about the parents it’s about the child. I merely meant that people should be grateful that they have healthy families and don’t have to worry about hospital appointments/physiotherapy/occupational therapy/speech therapy/feeding clinics/incontinence clinics/wheelchair clinics/child psychology/dieticians/adaptations/equipment and everything else that goes along with special needs. I think that many parents don’t understand the implications of special needs, and as rewarding as it is, it certainly turns your life upside down.

My point was, none of us, when we are pregnant sit there and pray for a disabled child, we may say we’d like a boy or a girl, but I’ve never heard anyone hope or wish for cerebral palsy or autism. The reality is we adore all our children regardless, but healthy, happy babies are what we wish for.



So, yes, all families need help, yes there may be many issues with pensions, benefits, housing and services in general. But it is an undeniable fact that not everyone is honest, and this has a big impact on the benefits and services that are available.

But I’m glad you asked… It is interesting to see how differently people feel,or what they get out of the blogs I write. and I will always clarify anything I have said.

So keep e-mailing and giving your comments,

Take care,

Sal xxx

Happy Birthday to Trojan, today is his twenty first birthday...again!!! I'm kidding, but I'm not sure how he feels about revealing his true age...but I think you'll agree, he looks great for seventy two!! (now he really will kill me). You are a true friend and a brillinat dance/blog/video/radio show partner....Hope you have a lovely birthday Trojan, and many many more to come. x x x x x x x x x x x x x x x

Today we are going to talk about an issue that many mums and careers have to deal with. ‘Lack of self worth’...uh oh!

Those of us who do not leave the house to do a conventional job, often feel like we're not seen as productive, contributing or valued members of society. Of course no-one sees the sheer magnitude of the stuff we have to deal with on a daily basis. There are days when as a parent/carer we’ll have a ‘to do’ list that would make a grown man cry…and all on less than four hours sleep in many case.

We’re not just housewives (god I hate that word!) like any mum, we’re cooks, cleaners, nurses and anything else raising children and running a home entails. As carers, we have the added opportunity to experience being physio therapists, psychologists, support workers, speech and language therapists, dieticians, occupational therapists…we have to keep up with dozens of appointments, add to that the fighting the system for school placements, key workers and equipment…are we having fun yet?

Then there’s often physical stuff, the lifting and handling…honestly I could arm wrestle Hulk Hogan and win after the lifting I’ve done over the years. I’m stronger than I look…and my godson deeply embarrassed his parents with a comment a few weeks ago as I helped them move furniture…”Auntie Sal aint ‘alf strong for a skinny bird” he said….his mum was affronted that he used the word ‘bird, and an argument ensued with his father on encouraging improper labels…I was just sadly thrilled that he thought I was skinny!

I have a feeling that a lot of women share these same thoughts of not being appreciated. Why is it that women are generally the ones that end up in this role in the first place. Is it by choice of by accident? Is it because the roles are so inherent in society. Women can earn as much as men now, so why are men still predominantly the breadwinners while women take care of the house and the children. Regardless of whether the woman works too.

It’s time that society started to recognize the importance of carers and all they do and contribute. What we do is beyond monetary value. As mothers we are raising the next generation of people who will be running the country. What we do is the most important job in the world. Can’t we acknowledge this on whole?

So the radio blog this week will explore and identify the value of our contributions as a mums, carers and friends. We can talk about how we feel our role is valued by society at large and also how it’s valued closer to home. If it was men having to make the decisions regarding their children’s schooling, hospital appointments, medical care and deal with the day to day running of the house, would it be more valued by society? Would it suddenly be an essential contribution to society as a whole.

We will also talk about how we ourselves contribute to this perception and what are we doing about it. Should we be asking if it’s acceptable, should we be demanding the respect we deserve?

Who are we? What makes us ‘us’, you and what example do we set for the people around us? Are we setting our children up to take on these same roles later on in their own lives.

None of us have all the answers but we can learn a lot by talking, listening and changing the negative mindsets that society, the government, our own families and we often seem to have of ourselves. This may be a good way to explore these issues and at the same time make a difference to someone else in a similar position.

These blogs have always been about reaching out to others and this way we can hopefully reach some of the least appreciated people in today’s society.

So let us know your views, if there is something specific you want us to talk about, and of course tune in to the show, you can phone in and have your say.

Right, I’ll take a breath now, as you can see, I feel strongly about these issues, I hope you do too.

Sal xxx

For those of you who don’t know how the system works (ha!...sorry, is supposed to work!); special needs children have educational statements, usually about a ten page document, that details their personal, physical and educational needs and it also determines the amount of money that goes with them to their school.

So of course, schools want the statements as detailed as possible so they get the required money to care for a child’s needs, and the education department want them as vague as possible so they don’t have to spend as much money on the child. This may sound harsh, but in my experience, it is also pretty accurate.

Deion’s ‘proposed amended statement’ for secondary transfer came in the post yesterday afternoon. And I was dismayed to say the least, that under ‘parental advice, input’ in the statement, it stated “no advice given.”

This is despite the fact that I made a ridiculously detailed (to the point of obsessional) care plan, which was colour coded, alphabetised and even contained photos of Deion being transferred in and out of his equipment… maybe I should have added the detailed video footage of the standing transfers after all!!!

It’s amazing. I spent hours doing this and made it so simple to follow, I would fully expect a four year old to go through it and be able to complete most aspects of Deion’s care without having to ask me a single thing.

It seems to have got lost…again, despite the fact that the first one was sent recorded delivery and the second one was hand delivered.

So, needless to say, not all the things that needed to be in the statement were in there. Luckily Deion’s primary school were their usual thorough and supportive selves and completed lots of info too…this was included.

This just makes me feel that professionals are listened to, doctors, consultants, physios, teachers, care assistants…no problem. But as I am just a mum!!! I guess they think I am not the person most qualified in every single way, about every single thing regarding Deion to give them advice…mmmm!

So after about thirty phone calls, it has now been decided that I will need to complete a care plan….give me strength, I explained I had done this TWICE! But to no avail, so I’ve been up half the night copying and reorganising another folder to simplify things for people who should know better.

Although they were also kind enough to inform me that home/school transport is no longer on the statements, this is something we have to appeal for later…”but not just you…all kids,” she said…”oh goody,” I replied, “us parents don’t have enough to do already, so if there’s something else you can leave off, and leave us to fight for at a later date…just to give us something to do in our quiet boring, easy going lives, then just let me know….”

And I’m sure they will think of a few things.

And briefly to the mum who e-mailed me yesterday… ‘NO! A school can not say no to a child based on physical disability alone.’ Send me more info if you like and I’ll help you look into it. But I think you know me well enough by now to know that I, for one wouldn’t take ‘no’ for an answer.

Take care, keep fighting, and let me know if I can help…

Sal xxx

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

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

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

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