Support for Global Developmental Delay

Our Regional Officer Lilly Fahey recently helped Emma, mum to 12 year old Rory who has Global Developmental Delay. Emma told us their story.

“I am a mum; my son Rory will be 12 years old this month.

Ever since he started primary school he has been ‘Statemented’. Before Rory started Primary school we had ‘Portage’ come round to my home to see Rory and help encourage him to speak. When he was at pre-school they were concerned that he wasn’t talking and he wasn’t able to keep up with his peers.

He was born 4 days late and was delivered by emergency Caeserian. He had trouble breathing he was in the Neonatal unit for just over 2 weeks in a incubator. He had trouble feeding and was bottle fed.

He struggled throughout mainstream school, most of Primary and the start of Middle. He could not cope there at all. I used to get phone calls every day to say I had to go and collect him because he was struggling. He was under the Senco, he had one-to-one support and also had one-to-one at Primary. He had one-to-one every day at Middle school.

I had a meeting with the Senco in the end because Rory refused to go to school and she actually said, and I was thinking along the same wavelength as her, that ‘Rory will not cope in year 6 or when he gets older’. By that time I was so relieved that the Senco could see that he was struggling. About a year and a half ago Rory was Diagnosed with Global Developmental Delay (GDD). The Paediatrician said that even though he’s 11, Rory has the mental age of 5 years old.

In year 5 at Middle school we pushed for a specialist Provision for him. He is now attending a specialist school. He started last September and he now loves going to school. He does have his moments every now again. He goes to school by Transport every day, which he loves. He’s a different boy now.

Also not long ago he was diagnosed with a few heart problems including ‘narrowing of the arteries’ and ‘hole in the heart’. One of his valves isn’t working as it should be. He has sensory issues, anxiety issues and is also on the autistic spectrum.

Rory’s father and I divorced back in 2010 but I am now remarried. I got married again in 2013. Rory Loves my hubby Neale, he gets on really well with him. My hubby gets on well with Rory.

Also I’ve not long ago been diagnosed with (GDD) Global developmental delay myself”.

The Arctic Rider Takes on New Alaska Challenge

Gordon Stuart

Gordon Stuart

When Cerebra Ambassador Gordon Stuart first started his Arctic Rider project, he couldn’t have imagined the distances he would cover and the huge amount of money he would go on to raise for Cerebra and other charities close to his heart.

He first started The Arctic Rider project as a way of using his passion for motorbikes to help raise money and awareness for Cerebra, Tiny Lives Trust and One Young World – all of which Gordon is an Ambassador and an avid fundraiser for.

He was soon setting himself motorbike related challenges as a way of raising funds and also keeping his growing army of loyal followers up to date with his exploits through Facebook, Twitter and YouTube .

In 2014, Gordon rode 6,000 miles solo to Nordkapp in the Arctic Circle and back, raising over £5,000 for Cerebra. This first challenge was known as ‘Arctic Ride 2014’.

In 2016, he continued by completing the UK ‘Iron Butt Challenge’, riding the length of the UK from Lands End to John O’Groats in under 24 hours. Gordon completed the ride in 18 hours raising over £1,600 for Tiny Lives Trust.

Gordon’s next challenge has been dubbed ‘Arctic Ride Alaska’ – an attempt to ride the length of Alaska from Anchorage in the South to Prudhoe Bay in far North Alaska, deep inside the Arctic Circle. This will require Gordon to conquer the notorious ‘James W. Dalton Highway’, which is often cited as one of the world’s most dangerous roads due to its remoteness, road quality and demanding weather.

The Dalton is a 414 mile stretch of mostly gravel road which was designed as a supply road to support the Trans-Alaskan Pipeline, which runs parallel to it. It is one of the world’s most remote roads with only 3 towns and 3 fuel sops along the entire stretch.

Gordon is hoping that through this challenge, he can prove that an ‘average road rider’ can conquer the Dalton.

Gordon will be taking on the Arctic Ride Alaska challenge in summer 2018 and will be raising money for both Cerebra and The Tiny Lives Trust. You can donate through his Virgin Money Giving page.

You can keep up to date with Gordon’s progress as he prepares for the challenge through his blog.

 

Team Cerebra at the Superhero Series!

Rob and Poppy with Anthony, Rhys and Kevin

On Saturday 19th August two very special Superheroes joined team Cerebra for the first ever Superhero Triathlon at Dorney Lake, Windsor.

The Superhero Tri is the UK’s one and only disability sports series for the everyday Superhero and their family and friends. It was also particularly exciting because it was the first ever Superhero Tri so our team didn’t know quite what to expect!

Returning to team Cerebra was triathlon veterans Rob and Poppy who have previously taken part in the Cardiff and Swansea Triathlons using equipment designed especially for Poppy by the Cerebra Innovation Centre.

Joining the team was Anthony, his son Rhys and family friend Kevin. Kevin has previously taken part in a number of “Tough Mudder” events but this was the first event of this kind that Anthony has participated in.

Anthony said: “Me and Kevin wanted to do something with Rhys not for him and that’s why we entered the Superhero Triathlon. We wanted to give Rhys an experience he has never had and will certainly remember.

Words cant describe how much gratitude we have for the support and generosity given to us by Cerebra. The team worked with us to give our son the biggest day of his life. Every step of the way Cerebra have shown nothing but enthusiasm and commitment to making it happen! An amazing charity with such amazing people. Massive thank you!”

They all did us proud and crossed the finish line with a mixture of excitement and relief!

So far, Rhys, Anthony and Kevin have raised over £1,000 for Cerebra which is incredible! The whole team has raised over £2,000 so thank you to everyone who has donated so far. You can donate to the group campaign here.

School Transport Report

The school of law team at the University of Leeds

The school of law team at the University of Leeds

Our student researchers at the School of Law, University of Leeds have published a report about the accuracy and accessibility of school transport information on local authority websites in England.

The students looked at 71 websites and identified serious failings in the information provided to families.  Almost 40% of the websites failed to clearly explain the legal rights of children with special educational needs or disabilities to school transport. The report also highlights how some school transport policies are more restrictive than they should be (see the examples on page 12/13).

You can read the full report here.

If you have a school transport problem, our Parent Guide explains what you can do to solve it.

Your Average Jo

In the latest of our series of articles from young people talking about growing up with a disability, Jo tells us her experiences:

“I was asked to write an article for Cerebra about what it’s like for me as a young disabled person. This, as I’m sure many of you are aware is a massive topic, and not one that can be covered in one fell swoop. The experience of disability is different for everybody, regardless of whether they are disabled or not. And within every personal journey there is so many things to talk about, such as attitudes and relationships, services, obstacles, the list goes on.

So, on this basis, and considering I haven’t written an article for Cerebra before, I thought I’d simply introduce myself to you all and try to give you an insight as to what it’s like being me. Granted, I don’t think my life is all that interesting, but if you’re anything like me you love to hear other people’s stories…So here’s hoping this is up your street.

I guess the mantra for my life arose when I was little. I impulsively announced to my Physiotherapist that I was going to be a ballerina when I grew up. When I tell you that I have Quadriplegic Cerebral Palsy and I’m a fulltime wheelchair user, I’m sure you can picture the look on the Physios face as she attempted to come up with a response that would neither put me down nor get my hopes up. After a few seconds, she tactfully suggested that perhaps I could be a choreographer instead.

It’s safe to say I didn’t become a ballerina, or a choreographer for that matter. Not because I felt as though my CP prevented me, but because with or without a wheelchair I have two left feet and very little artistic flare. The point is, from an early age I was never told I categorically couldn’t do something. If I had grown to be passionate about ballet, then there would have been a way for me to have been involved. At the same time, no one in their right mind would’ve led me to believe I could’ve become the next Darcy Bussell. I’ve always known my potential as well as my limitations. I’ve embraced them and worked with them.

With this notion firmly rooted in my mind, when I reached school age the prospect of being the only kid who used wheels as opposed to legs didn’t faze me. Sure, my fellow five year olds stared at me as they were asked to push me round the playground and thus were effectively told to ‘be nice to the disabled girl’, but I knew that I had much more to offer than a chair that they could take turns to push. My mission, even at this young age was to make them see beyond the chair.

I had learnt two lessons that day; in order to make people see you and not your disability, do nothing other than be yourself. And laugh…Laugh hard at everything, including yourself.

I’d love to tell you that I had a grand plan as to exactly how I was going to accomplish this, but I really didn’t. In fact, the icebreaker was entirely accidental and somewhat physically painful. A boy in the year below me unintentionally tipped the chair, and by association, me, into a patch of nettles. As I lay there laughing at my misfortune, I caught a glimpse of the poor boy’s face and realised that whilst I had found the situation hilarious, he had burst into uncontrollable tears at the thought that he had hurt another pupil. I had learnt two lessons that day; in order to make people see you and not your disability, do nothing other than be yourself. And laugh…Laugh hard at everything, including yourself.

Are you bored of me rambling yet? Oh good…I’ll carry on then.

One of the things that perplexes me most, is the assumption that disabled people are an inspiration. A case in point for this baffling concept came from an English assignment I was given which had to be based upon my first year of secondary school. I can’t remember what I specifically wrote, but I have a recollection of the poem detailing the countless risk assessments that had to be done for my needs to be met, as well as stating that I was always late for lessons because the routes that didn’t involve stairs took longer. I gave my work in with the passing thought that it was honest and humorous and didn’t think any more about it.

However, when my teacher handed the poem back to me she said that it was beautiful and that it had made her cry. In my mind, I thought her reaction was an over exaggeration as I had only done what she had instructed me to do. I remember thinking that perhaps this was simply within her character as she seemed to be the type of emotional person who would get through a box of tissues whilst watching The Notebook.

I like to think I’m grounded and I don’t for a second feel that the world owes me any favours just because I happen to have CP. I’m your average Joe (quite literally…My name is Jo).

At the point when I received two awards in one day for this ‘inspirational’ poem, things got weird. I was informed by the Headteacher that I offered an outstanding contribution to the community. To this day I don’t understand what the hype was about. I’m not saying I wasn’t grateful for the recognition and I wholeheartedly believe that many people disabled or able are inspirations. This said, it’s not like I had just climbed to the summit of Mount Kilimanjaro. If I had, I could understand what all the fuss was about, considering I can barely walk two steps before the air seamlessly runs out of oxygen. Instead, I was given praise for just being me, which I find totally bizarre. Shouldn’t everyone be acknowledged for being themselves?

So, there you go folks. Just a small snippet of my experiences as a young disabled person and some of the things I’ve discovered along the way. I like to think I’m grounded and I don’t for a second feel that the world owes me any favours just because I happen to have CP. I’m your average Joe (quite literally…My name is Jo). I’m a young woman, living on my own and I’ve just graduated from University. I hang out with my friends and adore animals. My disability does not make me abnormal or extraordinary. Everybody has challenges in life and my life is no different. The only difference is that many of my challenges include breaking down disability related barriers and mowing down all the obstacles in my path. But that’s a story for another day. If you’ll have me back of course!”

We are looking for young people to write about their experience of growing up with and living with a disability (parents can help if needed). The article can be about anything they like as we want this to be a chance for young people to write about what is important to them as an individual.  The articles will be published as individual blogs in our newsletter and on our website. If your child would like to write something for us please contact Emma Thomas on emmat@cerebra.org.uk.

Rhys and Anthony Take on Superhero Triathlon

Rhys, Anthony and Kevin

Rhys, Anthony and Kevin

When Rhys watched his sister take part in her first sports day, he wanted nothing more than to join in. His limited mobility meant that he couldn’t run the race himself but dad Anthony had a great idea to help Rhys get involved.

Anthony said: “I couldnt disappoint Rhys after he had such a great afternoon and was getting excited about racing so I carried him to the starting line and when it was time to go we were off. I held my arms round him, kicking his legs forward as if he was running himself.  He was absolutely hysterical with laughter all the way, people clapping and cheering him on, he was loving it! It was brilliant and both mum and I were mega chuffed that we did it.”

Rhys enjoyed the experience so much that Anthony was inspired to take on a new challenge.

“This is what has inspired me and my friend Kevin Davies to do something with him…not for him…by entering the Superhero Triathlon on the 19th of August in London. With Kevin completing a ‘Tough Mudder’ experience and me just being dad, we are going to take part in a 20k cycle, 5k run and 750metre swim. We are going to give Rhys an experience he has never had and will certainly remember. Hopefully inspiring hope and encourage more people to take part. We want to raise money for Cerebra who have supported Rhys with this opportunity and raise awareness for help and support for more SEN kids like Rhys.”

Rhys and Anthony will be using a boat designed by the Cerebra Innovation Centre. They tested it out ahead of race day in the swimming pool at the University of Wales Trinity Saint David Carmarthen campus.

Rhys and Anthony will be taking part in the Superhero Triathlon on 19th August. You can support Rhys and Anthony through their Just Giving page.

Anthony put together this lovely video of him and Rhys:

Christine Braves Wing Walk

We would like to say a massive well done and thank you to Christine Bunting who completed a wing walk to raise money for us on 4th August.

Christine is a member of our London Minds group and is no stranger to taking part in high adrenaline activities, having already completed a skydive back in 2015.

For this exciting new challenge, Christine took to the air on a 1940s Boeing Stearman biplane with the Breitling AeroSuperBatics Wing Walking team at Rendcomb Aerodrome in Gloucestershire.

Despite the rapidly growing list of activities she has ticked off her bucket list that have involved her to take to the skies, Christine actually has a fear of heights!

Christine said: “I wanted to do one last big fundraiser for Cerebra before I hit the ‘big 60’ which is rapidly approaching!

“I spent last winter wondering what I could do to top my sky dive because I wanted to do something that people would feel was really worthwhile to pay me to do.

“An idea began to brew and in a moment of, what I can only describe as complete and utter madness, I decided to sign up and perform a wing walk.

“Of course, now I’ve started telling people and raising money, I can’t quite back out and I have to go ahead with it!”

Christine has raised over £1,500 so far and you can visit her Virgin Money Giving page to help her reach her target.