Sally's World

When Trojan opened the front door to me yesterday, I noticed that his skin looked suspiciously smooth. He insisted that he’d done nothing more than have a shave, yet it looked a little more like he’d had a facial to me…mmmm!

I felt a little insecure then, I had intended, as I do every week for the video blog, to brush my hair, slap on a bit of lipstick and make myself look half presentable. As usual, by the time I’d sorted out the kids, the cooking, washing and ironing of uniforms, answered e-mails and restored some sort of order to the house, I didn’t have time to even locate my hairbrush, let alone use it.

I can’t help feeling that it’s so much easier for men!

Well, Trojan is a few years younger than me; I guess I can’t resent his youthful complexion… I’m not bitter…honest!

Anyway, I digress,

We did the second radio blog, we spoke about what’s been going on this week, about Barack Obama being elected into the white house and what it means to us, what we feel it means to this country also. Of course, it wasn’t going to go completely smoothly, we knew that as I accidently introduced myself during the music intro.

And it wasn’t until we listened back an hour or so later that we realised we didn’t shut off the live feed and we can be heard chatting away about the blogs and various other things…thank goodness we weren’t saying anything derogatory about anyone…and we weren’t using bad language (which makes a change for us…...kidding!)

We also did our fourth video blog, a brief version of the radio blog if you like, this went well, we are getting quite good at these now, no nerves, it’s just like we’re sitting having a chat.

We did try something new, and that was a brief advert for the t-shirts, I looked a bit too serious…but I’ll expect QVC to be recruiting Trojan any time now. We had a couple of bloopers, and we left one in because it made us laugh so much and kind of depicts what we are all about, not perfection (if only) but fun and getting a message out there.

So please log on to the video and radio blogs, as usual all comments are greatly appreciated.

We’ll be back….If you want Trojans autograph, please send and SAE to……

Trojan and Sal xxx

How do I keep my energy levels up some people are asking me?

How do I wind down after hectic days others ask?

Energy? That’s easy…chocolate, caffeine, sugar….no, I’m kidding, I know I talk about my bad eating habits, and I do have a sweet tooth. But I do make sure we all have a balanced diet. I suffer with IBS so avoid too much wheat and I don’t eat meat. I know a good diet is very important with regards to health and energy levels. I also drink herbal tea rather than have a lot of coffee.(Besides too much coffee and I am literaly bouncing off the walls).

For me, I believe that the more you do, the more energy you have. If you sit down and do nothing, you get tired, but if you keep moving, get up and do something, you’ll find your energy increases. Play music, dance around the house, whatever, just do something. I know most people can relate, if you have twenty things to do, you get them done, if you only have two or three, something gets missed. It’s all about the get up and go.

To wind down, I use yoga…it’s saved my life countless times. Yes, my days (and nights) are hectic to say the least, and I do have insomnia as you all know. But by spending 20 minutes doing yoga each night, I do get in a relaxed state. It’s easy to meditate after a yoga session and even if sometimes I don’t get to sleep, yoga…brilliant substitute for me. Otherwise I look a tad scary in the mornings....

When we go to Bimini and Wildquest, there are daily yoga sessions, its all part of the healing nature of the dolphin weeks. The kids are great at it, and Aaron was often found tying himself in knots and wrapping his legs around his head whilst in his wheelchair (I kid you not!).

If you want to try it, there are some great on-line videos and stuff, so it’s easy to see if it will fit with you.

Namaste!

Sally xxx

Well, Trojan and I have a busy day ahead of us tomorrow. We’re doing our second radio blog, another video blog as well as a separate short video blog. Of course, luckily on my part this involves nothing harder than a lot of chatting, drinking of tea and eating any sweets that Trojan may have lying around! But don’t worry, Trojan knows how much I appreciate, not only his hard work, but his belief in me and what I do…it means very much to me.

We’ve decided not to talk too much about the subjects of these blogs beforehand.

It is not as you may think because we haven’t a clue what they are going to be about…not at all, its because we want you to have to log on to find out, the suspense is good right?…okay, so that’s only half true, we aren’t totally sure of all of it. Yet! But that is because we find it turns out better if it’s not too strategically planned.

The salsa blog we did last week has had a phenomenal response, and is responsible for at least a dozen of our friends and family members going off in search of a good salsa class.

Excellent, it will be well worth it I promise. People have told us that it was obvious from the video blog that we are thoroughly enjoying our lessons. We are! We both look forward to them every week, and its great to be able to tell how much we improve each week. So please let us know how you get on.

And keep e-mailing us, we love getting your comments.

And to my friend…she knows who she is! No, Trojan is my dance partner, find your own!

So please log on tomorrow night/Monday morning and take a look at what we’ve been up to.

Sal and Trojan xxx

At five to six this morning, my phone rang. I picked it up worried that something was wrong, only to be met with someone asking me if I could have one two or three windows in my house replaced for free, what would I choose. I bit back what I actually wanted to say…which was…’nothing I’d burn my house to the ground rather than let you anywhere near it now you've woken me up you dozy cow!’

I was pissed off, its Saturday, it was my one chance this week of getting a lay in. Now the kids were awake too…no hope of getting back to bed.

But instead I said “look, its six o’clock on Saturday morning, go away, and before you ring back, I have new windows, I don’t need any replaced.”

Five minutes later, the same woman wanted to know if I needed a conservatory, ‘NO!’

Five minutes later a porch! ‘NO again!’

But this time I asked for her phone number…to which she replied with a shocked “why?”… “So I can ring you at an ungodly hour of the morning about something useless, irrelevant and that you have no interest in, then I’ll proceed to ring you every ten minutes until you want to scream and rip the phone out of the wall….then you’ll know how these phone calls make me feel.”

Why are there a bunch of companies out there who think we are not intelligent enough to source what we need? If I needed a new kitchen/bathroom/windows/advice on endowment mortgages/loan reductions or accident cover, then I am more than intelligent enough to find a company, get the best deal and go ahead and get it done.

Do they think there are hundreds of people sitting in their homes saying, “crikey, we really need new windows, these are practically falling out…if only a telemarketer would ring.” They sit huddled round the phone anxiously waiting for a call….the phone rings, they snatch it up…no, disappointment, just someone selling kitchens, they have to wait again!!!

Exactly…NO! WE DO NOT!

Considering most of us have enough technology in our homes to communicate with Jupiter if we should so wish, why on earth would we not be able to phone or e-mail a couple of companies and get a quote on what we need.

I get that people need to supplement their income, I get that times are hard, so yes, the weekend brings unproportionately high numbers of cold calling from people with second jobs. And okay, I admire the work ethic. But please people, after eight in the morning, before eight at night, take no for an answer and once someone has said ‘no’ take them off your list and never ever call them again!

Grumpy from less than three hours sleep

Sal x

Forgive me if I slip into unconsciousness while writing this…but I almost passed out with the news that something may have been accomplished with regards to Deion’s secondary transfer.

The head teacher of our chosen school got in touch today to tell me that the change order for the special bathrooms, hoist and changing bed has been agreed. I want to take a moment to thank him and his staff for their support in this matter also!

THANK YOU!

I would have loved to hear it straight from education, especially as I spend about seven hours a day talking to them, I currently have more quality time with them than I do my husband at the moment. They must have known when I was on the phone to them yesterday!

Anyway, it’s been agreed, which is all that matters. The work will be carried out, and Deion will have everything in place with regards to toileting facilities in his new school.

I am quite relieved, I know its just one round of many…but it’s the biggest one in my opinion.

And all I had to do was go down to the education department and threaten to rip someone’s arms off…no, that’s a joke…I’m kidding, honestly, I am not prone to bouts of violence ever/hardly ever/only when seriously provoked…and only when its someone trying to deny the kids something. Treat me however you want…I couldn’t care less, but don’t treat my children badly, because I’m a tad, just a TAD! Overprotective!

Right, now all I need to do is sort out hours and level of support, hygiene staff, transport, physio care, occupational therapy, a scribe, equipment supply…. world peace, global warming!

I’m sure we’ll get there…eventually.

Grinning to the point of gloating.

Sal x

Why is there a higher percentage of female chocoholics than men? I glimpsed a study about this very issue the other day whilst in the hospital waiting room, but then we were called into our appointment and I never got to the bottom of it.

I am a little disappointed in myself right now, I’ve just eaten three quarters of a bar of galaxy…this is terrible! I can usually manage the whole bar no problem, I must still not be feeling 100%...more training needed obviously.

I cannot remember a time when I didn’t love chocolate. And I know this is a problem I share with 90% of my female friends and family members…but not with any men I know…strange. Of course we all say it’s the men that drive us to it… but that doesn't explain my addiction when I was about five years old!

But personally I think it’s a healthy addiction compared to some…after all its the chocolate that keeps me off the vallium and brandy… I’m just kidding….I still need the brandy and vallium!!!

Take care…life’s too short to deny yourself everything.

Sal xxx

Please tell me you can relate. How come, when my handbag is only about eight inches tall by ten inches long, can it hold so much stuff? It must weight 20 pounds. I was in a shop earlier, opened my bag to pay for a book of stamps, and could I find my purse…nope! I did however find a small remote control car, my daughters reading book, a hairbrush (my daughters also), a selection of scrunchies, a box of colouring pencils and a tin of cat food.

It was getting slightly embarrassing, then…“There it is!” said the hopeful shop keeper…sadly not. “No,” I said showing him the empty purse that is merely my spare…well; you never know when you’ll need a spare purse right?

I had to leave the shop minus the stamps as I had no idea where my purse was…it was only on getting home, opening the freezer to take out something for dinner that I discovered its whereabouts.

Okay, so I get how it happened, my purse was in my hand...I was putting the shopping away…and if it was the first time, fair enough, but it happens on a disturbingly regular basis…not exactly this, I’ve been known to find my purse in the bin, the washing machine and the kids’ toy box also….

Maybe this happens to all women all the time, maybe handbags should be banned, men manage. That’s it, a wallet is it for me from now on…only then, where would I put the small photo album, my phone, my reading book, purse, notepad, pens, hairbrush, lip salve, personal alarm, cork screw, defuzzer, tape measure, tissues…how on earth do men cope without a handbag????

Oh well

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

A good friend sent me an e-mail yesterday, this was part of that e-mail and it touched me.

This is a poem written by the beautiful Audrey Hepburn, it was read out at her funeral, I thought I’d share it with you.

“For attractive lips, speak words of kindness.
For lovely eyes, seek out the good in people.
For a slim figure, share your food with the hungry.
For beautiful hair, let a child run his/her fingers through it once a day.
For poise, walk with the knowledge that you never walk alone.
People, even more than things, have to be restored, renewed, revived, reclaimed, and redeemed; never throw out anyone.
Remember, if you ever need a helping hand, you will find one at the end of each of your arms.
As you grow older, you will discover that you have two hands; one for helping yourself, and the other for helping others.”

Perhaps if we all tried to live life in this vein, the world would be a much nicer place.

Humbled,

Sal xxx

My day so far has led me to question whether we are a nation of people who are so self absorbed in our own lives, that we don’t stop and give a second thought to what someone else may be going through. Or is it that we realise the difficulties, but we just choose to ignore them.

Deion had a hospital appointment this morning, and the sheer amount of doors that got slammed in our faces, and the number of people walking in front of us had me looking down at us both and questioning whether we were actually invisible.

Then I had to go to Tesco’s to do some food shopping, there was a lady selling the big issue outside, I said hi and told her she could have my trolley pound on the way out, my usual small contribution. But as usual I was surprised at the number of people who not only ignored her, but shot her a look as if she was something they scraped off their shoe. Not like she was someone, down on their luck and trying to do something to help themselves at all.

Inside the entrance was a blind man and his dog with a collection box. I had some change in my pocket, and heard it hit the plastic at the bottom as it went in. On the way out, after an hour and ten minutes in the store, I put my newly acquired change in his collection box…and I was surprised that I still heard it hit the plastic. “How long have you been here?” I asked him. “Three hours,” he said. “and how many people have put change in your box?” I said. “Four,” he answered.

This is surprising isn’t it, that a man can stand collecting for people who are missing, in my opinion, one of the most precious things of all, their sight, and no-one stops to put their small change in the collection box. Surely, it’s just a few sweets, or half a pint down the pub even, but still hardly anyone bothered.

Are we not able to see that we can do some good, is it possible that we care so little of the plight of others that we cannot spare a few pence, or a pound to help. Then of course, if you can’t spare the change, holding a door open costs nothing!!!

Of the thousands and thousands of pounds that got spent in Tesco’s yesterday, a few pounds for a good cause doesn’t seem so much to ask does it?

Maybe I’m feeling a little emotional in my weakened post viral state, maybe I’m sick of people nicking all the disabled parking spaces, slamming doors in Deion’s face or ignoring any person who needs help. Whatever it is, it has really got to me today.

Take care, think of the needs of others and be generous when you can.

Sal xxx

Dave and I sat up last night watching the progress in the presidential elections. And were pleased to be able to tell the kids this morning that Barack Obama is the new president of the United States of America.

Wow…history has been made.

We spend so much time telling our children that the colour of their skin and their disabilities have no bearing on what they can achieve, that if they work hard, believe in themselves and have faith, they can achieve anything they want.

But nothing we have said over the years can have got this message across to them better than when Barack Obama stood on the podium and gave his speech. An African America elected into the oval office. He let nothing, least of all the colour of his skin stop him becoming the next president.

What better example could we have chosen to give our children this message? What better example to send to the children across the world.

xxx

Hi everyone, I just wanted to thank and acknowledge everyone who has listened to and given us positive feedback on the radio blog.

As with the video and written blogs, Trojan worked very hard at getting this off the ground. The visuals and all the technical stuff is down to Trojan, I just show up and chat for a few minutes, or write something down and hit a button, Trojan does the rest. As you can see here in this incriminating evidence...Trojan working hard, and me with a cup of tea in my hand!!! oops!

We did have a few minor technical issues with the show, (it was our first one after all) we got cut off a couple of times, but we were very proud of what we ended up with. So if you click on to listen, just persevere with it and I promise we do come back to you fairly soon.

You can tell we get more and more comfortable as we got into it and we managed to cover quite a lot of stuff, mainly how many things, like education, attitude and family life is affected by disability. I will admit, I committed my usual sin of jumping into the middle of some of Trojans comments or questions, and I have to give him credit for not giving me a swift kick to the shins…he could have got away with it on the radio too!

Our aim is for anyone who is interested in the issues to be able to listen while going about their daily lives, become regular listeners and to contribute their own views. We are very interested in hearing your comments and your point of view so please get in touch and let us know what you think.

Take care

Trojan and Sally xxx

Hi everyone, sorry I've neglected the blogs over the last couple of days ... I've been poorly in bed since Sunday night, caught some sort of weird virus and thought my head exploding was a real possibility, and preferable to how I was feeling. Now of course it looks as if a tornado has occurred in every room in the house….but restoring order can wait, still feeling to fragile to tackle it…

I guess even Wonder Woman gets ill, although the outfit would clash with the slight green tinge of my face today. Lets hope the postman doesn't need to knock, I've traumatised him enough lately.

I'm just glad that I didn't get ill until after Trojan and I did our video and radio blog on Sunday afternoon...it was alot of fun, and we're very pleased with the results, and hope lots of you tuned in and have had a listen since.

Right, I’m indoors today, but merely dosing on the sofa feeling sorry for myself, doing nothing more strenuous than lifting large quantities of chocolates to my mouth…need large supply of chocolates to regain the half stone I lost in the last 2 days.

So I'll be back as right as rain tomorrow (I hope) especially considering Deion has physio, hospital and O.T appointments. Oh joy!

Speak soon

Sal

We’ve been getting such a positive reaction from the video and written blogs, that Trojan has had another great idea…he’s on fire at the moment. He’s a one man marketing/advertising/promotions team!

So now we are adding radio blogs into the mix. This means we’ll be able to have more in-depth chats about the issues that the blogs are raising for all of you and hopefully we’ll be able to help more people and give more advice.

We got together yesterday and had a practice run, it was a lot of fun, although I don’t think it actually make much sense. I introduced the show, introduced Trojan and we proceeded to have a chat about everything from amateur dramatics to how Trojans ears pop when he’s on an airplane. That’s if you could make anything out amongst our laughter and the kids playing in the background.

As you know from the video blogs, Trojan is quite expressive with his hands, and the fact that he had his phone in his hand while he was talking only meant I had to practically leap around the room to talk into it. Of course afterwards, he told me it was on loudspeaker and would have picked my voice up anyway, but I’m not all that good at this stuff, so I didn’t know that.

Afterward we listened back to it and laughed even harder, I, apparently say ‘really, yes’ or ‘absolutely’ every ten seconds when someone else is talking…why has no-one ever pointed this out to me and told me how annoying it is? I also realised how fast I talk and how I get louder and louder the more animated I get.

Then we listened to a couple of other pre recorded shows from more experienced broadcasters, and Trojan got quite cross with me because I didn’t introduce him as ‘my fabulous co-host’ like the other broadcaster did. For this I apologise…you are totally fabulous Trojan.

So on Sunday we will be broadcasting our first live radio show at 5pm, you can go to the link on the blog page to listen in. And all joking aside, it is a very serious topic we’ve chosen to talk about a topic inspired by the e-mails we’ve been receiving in reaction to the blogs. It is about how disabled children are viewed by family, the education system, the health system, society and the government. So the title of this show will be “Disabled Children Precious Gift or Extra Burden.” we know its controversial, but we also know its important not to shy away from the issues just in case people find them uncomfortable.

We hope you join us and give us your views, it is important to get lots of people points of views on the issues, not just our own. So we’ll sign in and see where it takes us.

We will be recording another short video blog too, we’ve decided not to choose a subject, and to be spontaneous…oh goody!

See you Sunday

Sal & Trojan 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

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