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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.

CP and Me

Sallie

Sallie

We are asking for young people to write about their experience of growing up with and living with a disability to help us challenge negative perceptions and promote a wider understanding of different conditions. In this article sixteen year old Sallie tells us her story of living with cerebral palsy (CP).

“When people say physical disability, most people think that this means someone who uses a wheelchair. This isn’t always the case. I’m Sallie, and I suffer from mild cerebral palsy. You might not understand what that is. It’s basically a form of muscle tone. The muscles in my ankles are tighter than most people’s which means that my feet turn in making it hard to walk.

Looking at me, it might seem that I don’t look that disabled. But it is obvious when I walk that there’s something wrong. My toes turn in as I walk, and my ankles are weak on one side and stiff on the other which make it incredibly hard to move. I have very little flexibility in my ankles, and this means I can’t keep shoes on. Unlike a normal girl of my age, I can’t wear slip on shoes or high heels because my balance is poor. This has always been the case – so I’m used to it. We don’t know if this is anything to do with my condition but my feet have always been really small – a whole size apart. I’m lucky if I can fit into a size three.

I’m by far not the normal person. Due to my increased muscle tone, I didn’t walk until I was around two and a half. I was lucky, though. Due to my specialist physiotherapists, I was able to teach my feet to stay down so I could walk on the whole of my foot rather than the toes like most people with cerebral palsy. This is why I didn’t walk until I was over two.

My CP made school quite difficult. I was more mobile then than I am now. I was quite a tomboy and preferred to try playing football with the boys. They let me play, but my slow speed meant I was often left out, unintentionally. I was unable to run around with the others which made making friends really tricky.

2010 came and I had an operation on my feet to try and release the tone in my muscles to improve my walking. I was confined to a wheelchair for two months, unable to do anything myself. But, if it hadn’t been for my surgeon, I wouldn’t be able to walk the way I can now. I have lots of physiotherapists, surgeons and paediatricians whose work has allowed me to get the best I can out of life.

I often got clapped just for just attempting to run at sports day – I got the pity clap. Most people thought I couldn’t do sport – but I proved them wrong. In 2010, shortly after my operation to split my tendons, I took up swimming with the Gloucester City Para Swimming Team. To date, I am now a six-time national qualifier, four-time international qualifier and double British Record Holder in the 4x50m 34 point medley and freestyle relays.

This is truly a case of I can do it – not what I can’t do. I proved people wrong – disability does not mean you can’t do sport. I have a dream to compete in the 2020 Tokyo Paralympics, and I will keep working hard to reach that goal. If you have a disability, you are not a sub-human, you are a superhuman”.

If your child would like to write something for us we’d love to hear from you. Please contact Emma Thomas on emmat@cerebra.org.uk.

Living with Hemiplegia and Epilepsy

PoppyWe are asking for young people to write about their experience of growing up with and living with a disability to help us challenge negative perceptions and promote a wider understanding of different conditions. In this article eleven year old Poppy tells us her story.

“My name is Poppy and I have left-sided Hemiplegia and Epilepsy.  For people who don’t know what I have I will explain. Left-sided Hemiplegia means that you have a weakness on one side. Sometimes my arm does strange things. I use my left hand for steadying.  I also pick up the dice with my left hand when Mum and I are playing games. But otherwise I have difficulty using my affected hand and arm. I wear a lycra arm and hand splint to help stop my arm and hand from going everywhere.

My left leg has a high tone and that makes walking difficult. My left leg is also shorter than the right so I have a heel raise on my shoe. I wear a splint otherwise I cannot walk.

Poppy's pictures 1I had some surgery a few years ago because I could not walk at all then, because my foot was at an odd angle. I use a manual wheelchair sometimes if I get tired. I will be using a powered wheelchair around my new secondary school because it’s really big.

Poppy's pictures 2The type of Epilepsy I have is Focal Seizures. They are boring because you have to sit and wait for them to go away. This is what I think I look like.

I have to take medication twice a day but I still have seizures. My seizures make me feel woozy and I can’t think very well at school. Sometimes seizures upset my sleep and am awake during the night for hours so I am tired the next day.  My tummy feels odd too when I am having seizures and I go off food. I feel unwell for days before and after my seizures.

I like playing tennis with my Mum, which is good physiotherapy. I also have an adapted trike which I try to ride every morning before school, if I am feeling well enough. I love swimming but I haven’t been able to go for a while because of my seizures. I haven’t been able to attend my drama or karate clubs either because of feeling unwell. My seizures mean I miss out on lots of things. They are really annoying.

I was two when I got left-sided Hemiplegia, luckily I can’t remember anything. I was very poorly, and I could have died.  That is what Mum says anyway. I had E-coli and had to stay in hospital for seven weeks.

poppy-gameI got my Epilepsy when I was eight, when puberty started. So Mum thinks that my Epilepsy was triggered by puberty (which I agree with). I hope that means I will grow out of it. I really want to drive when I am older but if I still have seizures I won’t be able to.

I changed primary schools recently because I was having problems with friendships. It had been going on for a while. It made me feel like I was invisible. Now I am at a new school and it is better. I have nice friends. But I am told I am behind a lot and I need to catch up which stresses me out. Mum had a talk with school about avoiding saying I am behind because anxiety can trigger my seizures.

Hemiplegia doesn’t just affect my body though, it also has hidden effects – I can have difficulty processing information and with remembering. When I have seizures it affects these two aspects even more. Mum says I repeat myself a lot and get confused.

I have lots of hospital appointments and see lots of doctors and professionals. It’s really annoying. When they talk about surgery it upsets me and I feel worried.

I get up at 6a.m. every morning because I have a lot to do. I do daily physiotherapy and Occupational Therapy before I go to school and I practice washing and getting dressed, which takes a long time. I get really tired.

When I grow up I’d like to be an author. I’d like to have a family and be happy.”

If your child would like to write something for us we’d love to hear from you. Please contact Emma Thomas on emmat@cerebra.org.uk.

Allison’s Family Story

The Rose Family

The Rose Family

“There was definitely a blue line there! I could not believe it after the amount of negative pregnancy tests I had thrown away in the last 6 months. I was so happy – until on 11 o’clock on that very same day, I started to bleed. That was the start of a very difficult pregnancy.

At the 20 week scan the sonographer put the cold gel on my belly, and passed the probe over it…our baby was a boy. I smiled and felt a pang of love for my little bean. However, there was something else too. The sonographer said there were two ‘white markers’ – a calcium deposit in the heart and extra fluid around the brain. On their own they were nothing to worry about, but together were an indicator for Down’s Syndrome.

My heart sank to the bottom of my body, my emotions were everywhere. There was something wrong with our baby. I cried into my husband’s arms, my sister was there too. This was meant to be a happy day – finding out the sex of our baby, going to the shops and buying the relevant colour baby grow. Not this….

I was always worried and scared about disability – about something not being right with MY child, even before I fell pregnant. In particular I was worried about Downs Syndrome, even though there’s no history in our family. I suppose I worried because that’s the main syndrome which is screened for. It’s weird now to think about this, it’s almost like I had a sixth sense, and now how I think of disability in a total different way. It doesn’t scare me now. I just go with it…but more about that later.

After the longest three days of our lives, I had another scan. The consultant said my nuchal screening gave a very low chance of our baby having Downs and from what she could see it was highly unlikely. However, the only sure way to find out was to have amino testing. I did not want to do this because of the risk of miscarriage. We left the hospital crying again. But this time it was tears of happiness; there wasn’t anything wrong with our baby.

I bled on and off the whole way through, worried so much and felt really low and depressed. I had SPD, was in constant pain and couldn’t walk. It was almost as if the pregnancy was toxic to me. Plus Morgan (as we now called him) did not move much. I brought a fetal heart monitor just to reassure myself.

I somehow got through to 35 weeks and I started to bleed again. I went to the day assessment unit where they asked me “Do you know you are small for your dates?” I stayed in hospital that night, and had a specialist scan the next day. The placenta was failing and Morgan had stopped growing – the amniotic fluid was low and Morgan was not doing well, and was in a very awkward transverse breech position. He needed to be born.

Morgan with his brother Jayson and their mum

Morgan with his brother Jayson and their mum

The next day at 12.02 pm on 2nd October 2007, a 4lb 6oz Morgan Aaron Rose came into the world by C-section. He was all squished from where he had been stuck in my pelvis – no wonder they couldn’t get him out! It took 25 minutes to deliver him out which is a really long time for a C-section. His head was the shape of a banana as it had grown around his legs which were wrapped around it for a long time. He was a skinny little thing but he was beautiful with lots of dark hair and the most gorgeous button nose.

Morgan spent 3 weeks in the Neonatal Unit. He did not have a suck reflex, breast feeding was impossible; he could not maintain his body temperature and had a bit of jaundice. I managed to get him to bottle feed an ounce of expressed breast milk – it took him in an hour, but he did it!

After 3 weeks we finally took our baby boy home and we thought that we would be the end of our hospital visits. Everything was going to be fine now, or so we thought. Morgan had reflux. Michael sat up all night watching Morgan as he vomited all the time then I would take over during the day. We were so scared he was going to choke. There was vomit everywhere; constant washing and my poor baby was in pain. I spoke to the Health Visitor who said all babies are sick, it’s normal.

It made me feel like a neurotic first time mum but I knew this was not right. I finally went to the GP who referred us back to the hospital to see a reflux specialist. Morgan had some tests and was given meds and a special formula. It helped but was still hard to manage.

Morgan had torticollis (really stiff neck) and a type of plagiocephaly (misshaped head) because he was really squashed in my tummy and could not move. Our GP referred us to a physiotherapist. It was in that that treatment room that the realization of everything that had happened in the last year hit me. I broke down.

Sally, the physio, was great and she made a huge difference to me in those early days. It was Sally who referred us for Occupational Therapy and to a special needs play and development group. She recognized Morgan was different. At this point I can honestly say I did not really realise my baby was SO different from other babies. I had not done this before.

I met with some mums I went to an NCT group with, then it hit me like a ton of bricks – Morgan could not hold his head up or sit up like the other babies. He was still so tiny and in his little new-born baby grow still not really doing much. Their babies were so much more animated than Morgan. I stopped meeting those mums – it depressed me.

During the first year of Morgan’s life we had lots of hospital appointments for eyes, ears and reflux and a cranio facial specialist for his head shape. He had helmet fitted at 8 months old which helped mould it to a better shape – this aided his balance too. He wore his helmet for about 7-8 months, 24 hours a day.

He sat up for the first time when he was 1 year old, he walked at 19 months. By the time Morgan was 2 years old, he had had grommets put in, his adenoids removed and an operation to bring down his undescended testicles. He was very much delayed developmentally, non-verbal and much like a baby. I was thinking why?

I asked my GP for a referral to a Child Development Pediatrician. At the appointment I asked for genetic testing and a Brain MRI. The pediatrician agreed this was a good idea and referred us. We had an appointment with the geneticist who said that no particular syndrome came to her mind from examining and observing Morgan – she ordered the MRI and the bloods for the genetic testing would be taken while he was under GA.

All the genetic tests came back normal. However his brain MRI showed ‘significant changes’ – he had a lack of white brain matter and also an issue with grey matter. The radiologist writing the report put this down to infection or something that had happened in the womb given the pregnancy history. So that was it – it was a one off, something had happened in pregnancy which had caused Morgan’s brain to develop abnormally. This is why he had his problems, or that was what I was told and I accepted that. At least I had an answer.

Morgan had Portage (play therapy at home) and went to a specialist nursery at the age of 2 years and 4 months. This is where he came into his own, and so did Michael and I. Meeting other parents and families with children with disabilities and special needs was what gave us strength and a sense of belonging – It was a truly wonderful place.
By the time Morgan was 4 he started a special school – he loves his school and is doing fantastically. Morgan is non-verbal but has his own language and sound. He uses limited Makaton signs, loves singing and dancing and anything to do with music. Morgan is now 5 years old, developmentally he is about 12-18 months.

We decided we wanted to have another baby, a brother or sister for Morgan. I became pregnant again and our new baby was due in February 2011. I was monitored really closely, lots of extra scans and appointments, and I was constantly worried that something would go wrong. I requested a planned C-section, as I didn’t want any surprises, I kept worrying about something happening at the birth – I already had one child with special needs.

The Rose Family

The Rose Family

Jayson arrived 4 weeks early after my waters broke and I had to have an emergency C-section. He was stuck and they had to use forceps to get him out of the incision. He was all bruised and looked nothing like his big brother. He breast fed straight away and I thought “this is what it feels like to have a ‘normal’ baby”. Jayson also developed reflux and when Jayson was about 3 months old, my instinct told me all was not well. I just knew. I contacted Morgan’s Pediatrician and asked her to see Jayson.

She agreed. Jayson was very floppy, he was developmentally delayed and she could see why I was concerned. She ordered an MRI and the results took a few weeks to come back. The Pediatrician rang me to say that the results weren’t normal, that Jayson had a striking lack of white brain matter etc. etc. etc.…. It was happening again. In my heart I knew. But to hear her saying it threw me. I was in shock and I started to cry.

That was in January 2012. We saw the geneticist who explained that they had been convinced that Morgan’s problems were a one off but that now Jayson was affected in the same way. Both boys have the brain injury Periventricular Leukomalcia (PVL) they also have other brain abnormalities. The cause is a genetic one that they both share, but so rare current science cannot identify the cause so they were diagnosed with ‘a syndrome’. The geneticist even presented my boys at a regional conference to see if any other professional had an idea of what gene could be responsible for their issues.

A year after receiving Jayson’s MRI brain scan results, he was diagnosed with Spastic Dipliegia Cerebral Palsy – although this is not his definitive diagnosis, more like a symptom as the PVL has caused the CP. A genetic cause is thought to be responsible for both boys having a predisposition to white matter damage. It’s mind boggling really. Two boys with a ‘Syndrome Without A Name’ swans as we like to call them!

Morgan is now 7, developmentally he is about 2-3 years old. Essentially he’s non verbal, but he tries really hard to talk and is very vocal! He finally said ‘mummy’ last year! He has ADHD and attends a special school which is wonderful, he adores school.

Jayson is 4 and is a wheelchair user. He gets around at home by bunny hopping on his knees and he needs a lot of specialist equipment. He needs medication to help relax his tight muscles and has continuous bowel issues and reflux. Jayson is developmentally around 6-12 months, also non verbal and much quieter than his brother. He goes to a different special school to Morgan but it is located right next door!

So that’s it in a nutshell, there are bits in-between of course, but I would need to write a book to fit it all in!
I focus on doing everything I possibly can to make my boys lives enriched and fulfilling, to keep them happy with lots of positive experiences. Of course I have days where I feel down and not so positive, on those days I turn to my husband Michael, my family and friends I’ve made through the boys special schools and through online special needs forums – they, more than anyone else, just get it. We hope one day we may get a diagnosis and we are part of the deciphering developmental delay study and the 100,000 genome project.

If I could give any parent who has a child with a brain abnormality any advice, it would be to be pro-active, try to remain positive and think of the here and now – not too far into the future – because we don’t have a crystal ball. But today is what we make it”.

Allison Rose