Aside

A different way of looking at things…

A couple of years ago I was involved in person centred support planning training.

The guy delivering the training was a great advocate for person centred planning very passionate about it and spoke about how sometimes we get trapped in ‘Service Land.

“We have a special bus which takes people to the special centre or special school where in isolation they do special activities.”

At the time Zak was in year 4 in a mainstream school and although academically he wasn’t making huge progress he was doing well socially and was very much part of school life. I could be a ‘normal’ mum and take him to school and he could go to a regular out of school club and take part in school discos etc. So I sat through this talk on ‘Service Land’ agreeing that the best thing was for complete integration and to get rid of ‘Service Land’ and if I am honest I was feeling quite smug about decisions I had made for my child.

Two years down the line I have now had to revaluate everything.

Last week Zak started a new school and I suddenly I find myself in ‘Service Land’. Instead of going up to secondary school with his peers he has made the transition from mainstream to a local special school.

After being a firm believer in mainstream education for him I have started to see the value of the specialist provision for Zak. What changed my mind? Zak did.

When we started to prepare Zak for transition to secondary it became clear that he didn’t want to make this step, he didn’t want to continue to struggle academically. He wanted to be like everyone else not singled out anymore, not mothered anymore. He also told me he wanted to go to school without me. He didn’t want his mum taking him into school when all of his friends arrived independently. His best mate goes to special school and goes on his own in a taxi. Zak saw that as independence, I saw it as singling him out.

His mainstream school were great, which made the decision so hard. Some of you will have seen my Facebook status’s agonising over what to do. I had a Senco coordinator telling me they would move heaven and earth to accommodate him and I had a Head of the local special school saying Zak would thrive there and they would love to have him. Zak was popular, well liked and looked after in mainstream. They included him as best they could. He went on the residential trip, he was made house captain and he took part in the nativity plays. However as he progressed through school he started to loose some independence. For example he had to use his wheelchair to get around the large campus, he had to take different routes or go at different times to things. He had a lot of 1-1 teaching which meant he wasn’t always in with his peers. He had a teaching assistant who became part of our family but he did start to heavily rely on her, in such a large and busy school he needed her reassurance. Also the other children were prone to mothering him. When we did visits to the secondary campus it became clear that he would loose even more independence. The decision was clear, and Zak after visiting his potential new school was definite on what he wanted.

The last day of term was awful, not for Zak but for me. I was grieving; this was another thing that Duchenne had robbed me of. It sounds silly but I was so sad that it had taken away my opportunity to see my son go into secondary school all dressed up in a blazer and tie. At his leavers assembly though I had the opportunity to see just how far he had come in mainstream education. He got up and played a 3 minute drum solo in a hall full of parents with all his class mates watching. The confidence shone and so did his talent. He made me so very proud.

I have learned a lot from my son over the past few months, he is a great teacher!

I have learnt that what I saw as segregation he saw as inclusion and the chance to be like everyone else.

This last week he has sorted his own bag out and carried it out to the waiting taxi. He comes home from school and tells me what he has been doing. For the last couple of years all I have had is a grunt and ‘I have done hard work’

Last night he said to me ‘Yeah it is school tomorrow’

He has found his place, a place where he can learn on the same level.

The biggest thing I have learnt that sometimes I am so busy fighting for his ‘rights’ and needs that I am in danger of loosing sight of what he actually wants.

I will continue to advocate for inclusion in our society for all disabled people, of course I will and I still think there is a definite value in mainstream education for disabled children but I also now see there is a value in our specialist school system and there is value in having the choice between good inclusive mainstream education and good inclusive education in a specialist provision.

Of course last Tuesday seeing all the Facebook photos go up of Zak’s peers in their new secondary uniforms was hard, it reminded me that my life as a parent is in ‘Holland’ and it is different. However the smile on his face this morning when he was packing his bag and getting ready for school and the excitement in his little strut as he walked out of the house, reminded me that my world is indeed special and although full of obstacles and heartache it is also full of smiles, rewards and accomplishments.

A different way of looking at things

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Moving from Inspirational to Aspirational..I can!

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I can

An iconic photo of the Paralympics

Jessica Ennis and her coveted six pack

 Over the Summer I, like millions of others around the world, have been following the Olympics, fascinated by finely tuned athletes doing amazing feats that most of us can only dream about, From the comfort of my sofa, cup of tea and chocolate biscuit in hand, I watched Jessica Ennis stunning gold medal performances cheering her on with a passion I normally reserve for Welsh rugby. Admiring her female six-pack somewhere in my distant memories I recall having one similar to that, I then remember my gym membership card which has been shoved in the useful things draw for the last few weeks. Note to self must get it out.

As a family we watched Tom Daley’s bronze winning performance, laughing at how Tom Daley was having the biggest party in the pool whilst the Chinese athlete seemed devastated to have only come away with Silver. (His mum obviously didn’t tell him that winning isn’t everything, it’s the taken part that counts)
My 5 year old watched the gymnasts in awe and for the next few days she tried to do stretchy wonderful things with her body, attempted handstand, perfected her crab and took running jumps on to things she really shouldn’t! We were all inspired by what we saw.

Then came the Paralympics, the super humans. I must admit I do have mixed feelings with that term. However political correctness aside I was looking forward to these events.  I wanted my boy to watch some of these events (apart from the rugby, no it’s not a case of wrapping him up in cotton wool but what mother allows her son to play murder ball!)  

Anyway.. my son has recently been saying I can’t. I was hoping that watching the Paralympic athletes would show he can. I explained to him that some of the athletes had the same condition he has. (and like my mother used to tell me there is no such word as can’t)

The four of us sat down to watch the Paralympic opening ceremony. I was silently praying that Sir Paul McCartney was not making an appearance on this one. My son fell asleep at the Olympic opening ceremony so I expected much the same from him this time but as the athletes paraded into the stadium something shifted in my 10 year old’s eyes. Here were ‘people like him’ we had a running commentary on the type of wheelchair, the man with no hand, the one who had no leg, he asked question after question and he was fascinated! These athletes were being clapped and cheered and they weren’t running in, they had wheelchairs like him, a scooter like he has. I could see the change in his face and as the athletes waved to the camera he started to frantically wave back. Finally something he could relate to and something that could tell him ‘he can’.
He then got very concerned about the performers suspended in their wheelchairs from the ceiling, asking if they had their seatbelts on.

Over the next couple of weeks I made sure that he could watch some of these games and see that yes although these athletes have very real disabilities they can still accomplish great things. You can dream big despite having a disability and you can achieve and be successful.

As a mother I always try to instill these beliefs in both my children, I want them to grow up and be confident, have a sense of achievement, have unfailing hope. This is fairly easy with my 5 year old girl, she is flourishing, naturally clever, very pretty (I am biased) and has oodles of confidence. With my boy though it is slightly harder, born with a genetic condition, which is progressive and no cure (at the moment) how do you keep that hope alive? How do I keep encouraging him that he can, knowing that each new skill he learns he will lose again, that as things stand today at some point in the future he will lose the use of all his muscles? The truth be known there are some things he can not do. Surely even the best mother I think must struggle with this at some point. Of course he is gorgeous and he is gifted but when he looks at his peers, when he struggles with school work,b when he sees his sister tearing around like a loon and when he watches his sporting hero’s it pushes him deeper into I can’t…
However you put my boy into a social setting and by God he can! My son can talk for Team GB if there was a category for talking he would win gold medal hands down. (those of you who know him are now cheering him on from the sidelines, nodding your head and smiling to yourself as you recall his many questions, and again I apologise profusely for his inappropriate ones)
These Paralympics showed him something of I can, knowing that some of these young Paralympians had the same condition as him, gave hope and gave a tangible sense of I can and it wasn’t just to me and my son but actually to a whole community who are often told you can’t. Some of them had even come from Scotland to London showing him that he can travel and be independent. It encouraged us and spurred us on. During the opening ceremony a friend on twitter told me that Holland was alive and kicking and throughout the Olympics we started to embrace Holland a little more (If you don’t know what I am talking about read the link at the bottom of the page)

The Paralympics was not a celebration of disability it was about sport. Journalists were actually told that focusing on the athletes impairments would be considered unnecessary. Focusing on someones disability goes completely against the social model. Putting that to one side, the Paralympics brought disability to the forefront of the nation, it brought wheelchairs, it brought prosthetics into our sitting room and it ‘normalised’ it. For two weeks at least, people started to see past the disability and past the aids and they saw the athlete. They saw the I can.

Peoples opinions have started to change and long may that continue, hopefully my son’s teachers will have been inspired, his peers, his friends and they will start to see he can. Oh and let’s not forget about the other mums, those that look on with pity as you take your child into school (thankfully I don’t know many of them)

Lord Seb Coe summed it up at his closing speech

“In this country we will never see disability the same way and the Paralympians have lifted the cloud of limitation”

I have seen my children inspired by what they have seen, and I hope that inspiration moves on to aspiration. Inspiration often runs cold doesn’t it, I know that as my gym membership card is still in the useful things draw. Aspiration is an internal thing, it’s about mind and spirit it’s not just a warm feeling after watching someone do something amazing. Our Team GB Olympians and Paralympians have done both they have aspired to do great things and in turn they have inspired a generation, that was the logo of the games after all. This government needs to follow on from this and we as individuals need build on this. The word lasting legacy has been used a lot in the last few weeks, I hope it’s not just a term the ministers are playing with. For disabled young people in particular I pray there truly is a lasting legacy with,amongst other things, more sporting opportunities things need to change as even in 2012 our mainstream society is still not the most accessible.
Our young people disabled and non disabled need opportunities that make sense to them, they need to have the space and the opportunity to dream and to achieve and we need to give our children the chance to succeed, the courage to aspire to great things because after all it will be their turn to inspire the next generation.

Dont just be inspired by great things aspire to do great things..
My job as a mum is to ensure that both my kids can turn this inspiration into aspiration and so I have chased up my little girls gymnastic lessons and have looked into the boccia clubs for my boy.

The gym membership card is still in the useful things draw, well 2/3 aint bad 😉

PS the bit I mentioned about Holland, you can read the poem here its called Welcome to Holland http://www.journeyofhearts.org/kirstimd/holland.htm

My 5 year old has learnt the art of guilt tripping..Help!

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Imagine the scene, its bank holiday the last day of a lovely long weekend and some much needed time to rest and play away from work. I was looking forward to a chilled morning with the kids and then a fun afternoon when hubby came in from work. Instead we woke to rain, wind, cold and a hyper 5 year old. The end of the pay period and the weather put pay to any fabulous activities I could muster and so a day inside loomed, long, dark and drawn out. (OK maybe I exaggerate a bit)

Hyper 5 year old turned into defiant hyper 5 year old after lunch and then horrid, defiant, hyper child after tea.  Pocket money was banned, nice toys were banned, the beloved cuddly Tyler was banned. There was nothing left to ban! I was tearing my hair out and I don’t often admit to that but let’s just say all the childcare qualifications in the world and all the experience in nurseries just can not prepare you for 5 year old girls.  It’s a good job the hair extensions are long gone or she would have been repaying her pocket money back to me for months to come!

There was however about an hour of calm, a small oasis where she did become my little angel and she played in her cafe and served us hot chocolate and cookies. However the halo soon slipped.

So the 5 year old hyper, defiant and horrid little girl was bathed and then sent to bed in floods of tears. Doing the good mother thing I sat down on the edge of the bed and had a ‘chat’. You should never go to sleep on a row. This little blue eyed girl sniffled away and looked at me intently suddenly she reminded me of myself. I was a bit of a handful at times according to my mother. I unlocked memories at the back of my head and suddenly brought to mind how my mum spoke to me and so I said ‘ Sweetheart I can’t live in a shouty house, you have to stop behaving like this. Your Nana used to tell me that if I didn’t behave I would be sent away to a naughty girls school, is that what you want?’ Suddenly she looked horrified and I thought I had got through but she just replied ‘ There is no naughty girls schools round here’  Goodness me she is clever 😉 so swift change in tact, maybe my mother wasn’t always right after all 😉

So I picked her up, put her on my knee and gave her a cuddle and explained I was looking forward to a lovely day off work with them but she had made it a sad day. She looked at me all big blue eyes and a sniffly nose, tears running down her face and she said ‘but mummy you are always at work’

Wow…5 years old and she has learnt the art of the guilt trip! I nearly ended up a blubbering wreck. What do I say to that? I know I am not always at work but is that how my little girl sees it? Suddenly all the angst and frustration of the day melted away. She was my gorgeous little girl, I held her tight and close (just like my mother did when I was scared or sad) and reassured her. I tried to explain why mummy had to work. Obviously left out the bit about the government cutting tax credits, putting prices up etc etc 😉 She is clever but not old enough for politics.

I found myself saying that I would take her on a special treat somewhere just me and her, a girls day. She wants to see Brave and I said that’s what we will do. Her eyes lit up and she stopped sniffling. There it was at the back of her eyes the little glint and I realised my little 5 year old was mastering the art of the guilt trip and I had fallen for it!

Holding her closer still I whispered to her ‘well if you can be good for the next few days then we will go and see Brave’ 🙂

Mummy has perfected the art of bribery

Two days after the event, this morning I asked her ‘do you really think Mummy works to much?’ She looked up at me and shook her head and gave me a big cuddle. Well I just had to cImageheck…

Hello world!

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I love writing, thinking, communicating, discussing and love getting my own opinion out there 🙂 so I thought I should get a blog and ended up here. It seems as if everyone and their dog have blogs at the moment and I felt I was missing out. I need more of an outlet than the 140 characters on twitter,  I have never been very good at getting to the point. My English teacher dreaded my homework coming in as it was page after page after page, what can I say I tell a good story (just not a short one) anyway I digress…

Having been encouraged by various friends to pursue writing I thought why not. So my blog is about me sharing my thoughts and maybe my wisdom but also about me having an outlet to develop my creativity and my writing. It will make me feel as if I am doing something and if I can cheer people up along the way, give them something to thing about and give some helpful insight then even better.  Please feel free to share the blog and to comment.

So come join me and who knows where we will go.