Down’s Syndrome Awareness Month 2019!

October is Down’s Syndrome awareness month which gives me a reason to do another post on how adorable Tommy is. A few months ago I did a post about Tommy and my feelings towards no longer being the only disabled member of the family. However, that post was 4 months ago now and Tommy is now 7 months old so since then he has taught me an awful lot about what being a cousin means. I am very close to my family and we are always in regular contact- to be fair I would say that me and my cousins are a lot closer than most. I am very fortunate to be so close to my cousins and am thankful for their help as just like I’ve said about my sister sometimes even with my younger cousins I still feel like I am the one being looked after. I’m the one who has to grab on to their arm and I’m the one who asks them to carry my drink. As I’ve said time and time before this is fine I’m used, to it I’m not going to have a break down about it anytime soon; when a younger cousin asks you to help them and you have to redirect them to their other cousin, that’s also younger than you it can be a bit disheartening even if it’s something small like carrying their drink.

But with Tommy it’s completely different… Yes, I’ll never be the go-to cousin for practical elements and I can’t pick him up and bounce him; I can offer Tommy something that no other cousins can because I have a sense of understanding and that will always make our relationship special (even if he wriggles too much to sit on my knee). Even though Cerebral Palsy and Down’s Syndrome are completely different conditions Tommy and I have similarities and can understand each other in a way that no other family member can. Just like my parents have a new connection with Tommy’s parents because they understand what it’s like to have a child with needs. Since Tommy has been in our lives he has taught us so much and has enabled us to be closer as a family especially Amanda and me. This is because we now have something in common that we never thought we’d have in common and I must admit sharing experiences of disabled activism with a close family member is a very good feeling. I feel like I have taken on two roles one of them being the best big cousin to Tommy and the other one being the best little cousin to Amanda!

Amanda always keeps me updated on Tommy’s latest appointments- I love hearing about how he is getting on as I said sometime’s I can’t give advice but sometimes I can and even though my experiences aren’t the same as Tommy’s at times they are similar. An example being that me and Tommy both do physio and even though Tommy’s physio is different to mine me and Amanda still send ‘physio selfies’ and can still talk about it, mine and Tommy’s physio needs are different but we both have physio needs and that forms part of our special bond. I also relate to Tommy from an occupational therapist perspective- I have always said that I could see myself working in paediatrics’ so being able to listen to Tommy’s experiences just inspires me to become a paediatric occupational therapist even more because I want to help Tommy and understand his needs in the best way possible. I do feel like I have a better understanding of Tommy’s needs and the reasons for his therapy interventions such as ‘tummy time’ even though I’m only a year into my degree.

But, despite having this bond with Tommy- I love him for being Tommy and yes we would have had a different bond if I wasn’t disabled but I still would have loved him the same. Just because I understand his situations a bit better than other family members doesn’t mean I’m an expert on Down’s Syndrome either because I still have a lot of learning to do. Does it help me that I’ve had a seminar on it? Of course, but my own learning on Down’s Syndrome has just started, and this is what Down’s Syndrome awareness month means to me. Down’s Syndrome awareness month is an opportunity for me to learn more Down’s Syndrome and to learn more about Tommy. Yet, this blog is a start because when I’m writing about Tommy I learn so much about our relationship and the steps I need to take to keep building our relationship in which I and Tommy can always look back on to remember how significant our bond was even just 7 months in to his life.

Thank you for reading. Please share and spread awareness about Down’s Syndrome!


The Hidden Elements of My Disability

A few months ago I wrote a blog post on How My Physical Disability Can Be Perceived in which I kind of defended myself in saying I’m not always as complicated as I seem. I’ve mentioned on multiple occasions that I don’t like the fact that when I say I did maths at college people assume I had to redo my GCSE’s, but on the other hand this doesn’t mean that my physical needs aren’t demanding because at times they are. I’m not writing this blog post to write a list of my needs and tell you what I can and can’t do, because let’s face it that’s a bit boring and a bit too much information. However, I want to give you a few examples of how not everything is as it seems…

For example, take my profile picture- on this day I was going to a party (I’m aware I need a much more professional picture hopefully I’ll have a new one soon) so, I have my hair done and my make-up on. Everything looks ordinary, yeah? It is ordinary but I didn’t do my hair or my make-up, my sister did. I’m not saying the sole reason why she did my hair and make-up is that I couldn’t have done it because I can, it just wouldn’t have been as good. I understand, that I’m not an artistic person and I’m not saying that without CP I would be a hairdresser or a make-up artist, but this would certainly be easier. So, why am I tell you something I’ve already told you before? This is because on this night people at the party who didn’t know me and was sat at the other side of the room probably just thought that I was an ordinary individual with no complexities. This isn’t a problem, I am an ordinary individual and I do want to be treated the same but, at the same time, I wish that people could just see how much effort it’s taken me and my sister to get my sat there looking how I wanted to look.

Another example is when I’m sat in a restaurant eating with friends or family, to other people around me I’m just enjoying a meal. Which I am (I always enjoy food); the people around us won’t know that whoever I’m with has had to cut up my meal or that I’ve ordered a burger because it’s a lot easier for me to eat. Whenever I go to university or placement I always make sure I look respectable; people don’t realise how much effort goes into me looking respectable for example when I’m on placement I have to have my hair tied back which again means that my sister or mum has probably done it. I love fancy tops it’s very rare you’ll catch me in a plain t-shirt, in which I might have a top that buttons up, meaning that someone has helped me that morning to button it up.

I don’t mind that I need help in these situations because I’ve never known any different and I have got more independent at doing tasks like my hair and my make-up over the years; I know that I’m always going to struggle with buttons. Which is fine I don’t want people to feel sorry for me but if people knew how much effort these daily tasks take me then I feel people would understand my complexities a lot more. For example, in the winter I go to university I have a cold- so what it’s winter everyone’s got cold, I’ll put a brave face on and not complain. But it affects me so much more in terms of fatigue and puts me at the risk of potentially having a seizure and even though I may not complain at university I’ll come home have dinner and go straight to bed because I’ll be too tired to do any other work. I’m not saying that an able-bodied person doesn’t also do this, but it’ll be a lot easier for them to push themselves than it will me because that work may only take them 30 minutes but for me, it’ll take an hour.

I’m not writing this blog to tell you how complicated my life is and to be negative, I’m writing this blog to explain to you how many elements of my disability are hidden. When I went to Berlin with college, my friends said that they didn’t realise how much I depended on someone because when I’m at college and university I don’t need to depend on someone as much because plans have already been put into place; when I get home and I need someone to cut up my dinner and bring me a drink upstairs so I can wind down and watch TV whilst drinking a tea. It’s fine that these parts are hidden we all have private aspects of our life’s disability or not but my hidden aspects hide a lot about my disability and I just feel like if more people knew this my needs would be a lot more clear and I wouldn’t have to explain why I’m not going out that night even though I may only have a sniffle. I’m not saying that people wouldn’t help either; at times situations occur where I don’t feel like explaining and telling everyone about the private aspects of my life.

Thank you reading,


Maintaining Braces with Cerebral Palsy

Hello as if we’re in September already! I decided that this week I would do my first throwback post, to my younger years, as I haven’t really talked about my childhood that much therefore, I thought I would start by telling you all about my braces. I’ve decided to tell you about my braces because this was a difficult period of my life- anyone who has had braces knows that they can be difficult at times, but when you add CP into the mix the level of difficulty increases.

So, the background story… Anyone who knows me knows that I never do simple and my situation with my braces wasn’t simple, to say the least as, more or less straight after I’d had my initial appointment to see if I needed braces I had my braces put on as I was classed as an “emergency case”! I was classed as an emergency case as my last tooth that was coming through wasn’t coming through in the correct position and it was, in fact, damaging my nerve. This meant that after I had my braces put on I had to have an operation to remove my last baby tooth and two more teeth (as my mouth was too small for all my teeth), then I had a gold chain put in to bring the tooth that was damaging my nerve down slowly into the correct position. Already this process was a lot complicated than anticipated I remember when I got told all this information and I come out of the room and turned to my mum and just said ‘Why me?’. I just felt like my life was complicated enough without this- which looking back is rather selfish of me, but my 13-year-old self didn’t have the same outlook on disability as I do now.

Having to wear braces never got me down; looking back now I probably would be able to take my situation on board a lot better. However, this still doesn’t mean that physically I would have found it easier because physically maintaining my braces caused a lot of issues. Due to my situation being complex I had to get my braces tightened more often meaning that I was in pain most of the time. It was also very hard to keep them clean independently, due to my CP I don’t have a lot of control over my mouth and tongue so when food gets stuck in my gum I must physically go to the bathroom and brush my teeth. Meaning that if this happened when eating in a restaurant it would leave me feeling a bit embarrassed, over the years (as this happens regardless of braces) I have developed techniques to subtly resolve the situation in my own way without people knowing. But, with braces, most issues were caused due to my lack of control; like I said my control with eating still causes me a lot of issues today but this is a whole other blog post and to be honest is probably something I’m not quite ready to be 100% open about.

I was very keen on making sure that my braces were always clean and I always did what the orthodontist told me but as said it was hard to do this independently and my parents did have to intervene a lot more than I would have liked. However, I did get into a routine. Overall, I had my braces on for 20 months, so I did get better and become more independent towards the end!

Photo by Pixabay on

Elastic bands are common with braces; in my case, they lasted 2 weeks before I had to call the emergency orthodontist on a bank holiday weekend! I’d struggled with the bands and was cautious that I’d end up doing damage, but I didn’t think I could somehow break the bar at the roof of my mouth and cause it to stick into my tongue. Let’s just say, I never wore elastic bands again after that incident.

As you can see having braces wasn’t the easiest 20 months of my life; I am happy with my teeth now, still annoying that this was all because of one tooth but it taught me a lot. It taught me that not every thing’s as easy as it looks at first however practice makes perfect (a clichè, I know) but, it’s true! Yeah, this was a very frustrating period and it would have been a lot easier if this situation wouldn’t have occurred but that’s life, unfortunately, this isn’t the first frustrating situation to occur and it won’t be the last. So, I might as well reflect on it and look at what’s it’s taught me rather than focusing the negatives, this situation is never ideal even for an able-bodied person, but worse things happen!

Thank you for reading,


Taking My Electric Wheelchair Abroad for the First Time

Hello! This is my first time writing a post for NSTP in almost 5 weeks as I was all prepared a week before I went away as I was very busy the week leading up to my holiday so it feels very good to be back! I wanted to write about taking my electric wheelchair on holiday because this was a very big deal for myself as I am still not very confident in my electrical wheelchair as I mentioned in my blog post about restricted independence. I took my new electric wheelchair on holiday as my old one is far too heavy to take on the plane in which this was my reasoning in buying this new wheelchair, for more independence. I have nothing against my family pushing me- it’s certainly less stressful but I’m 19 now it’s time to grow up and become independent! When we made the phone call to the airline company to confirm that I was taking my electric wheelchair it was very exhilarating however, I was still a bag of nerves…

As mentioned, this wheelchair is new and works differently to my other one, so I was worried about getting it around the airport never mind tackling Spanish pavements. So, let’s start at the beginning… Manchester Airport- this was fine I was worried about getting it through duty-free with all the glass stands but no one died! No, there were no incidents at all. I took my wheelchair right up to the doors of the aircraft and I was boarded so far, so good! However, when I got it back in the ambulift in Spain I soon came across my first hurdle- a missing nut. Quite an important nut as well, this particular nut tightened my steering control to my armrest therefore, it was loose and holding the control and steering at the same time, just wasn’t happening I made it to the shuttle bus but there was no way I could’ve carried on like that for 2 weeks! We arrived at the villa late at night, so it was case of going to bed and dealing it with it the morning. The morning came and I was worried about it straight away as we were going on a walk that morning to find somewhere for breakfast, we were searching the draws in the villa for something to use to temporally put it in place until we came up with a solution… WE FOUND A SOLUTION! We found a nut in a draw that was a perfect fit- I couldn’t believe my luck!

With that situation dealt with it was all back to normal and I was ready for the challenge! The area we stayed in was very hilly, but we knew this before I decided to take the chair and let’s face it, it’s better than my parents pushing me up and down the hills in my manual chair. It took me a few days to get into it and to know what speed I needed to get down the hills, as I had to get down 3 hills to get to the main strip, but I got into it. I made sure I had it on a lower speed when I went down the hills and around corners but then I needed the chair on a higher speed to ensure that I wasn’t holding the traffic up when crossing the road. Which seems obvious I know but, at the beginning of the holiday I was feeling very nervous and going slow across the roads made me feel safe; then I soon realised that this was, in fact, making things unsafe. So, after a few days, I found my feet (or wheels) and was feeling a lot more confident! An issue we did have was the lack of street lighting, late on at night it was very dark resulting in us using our torches on our phones. As I had one hand on my control, I found it difficult to use my torch with the other but I had 5 other torches lighting up my way so, I was fine; if I was on my own this would have been tricky.

After getting to know the area more we decided that we would take a different route home and explore… This route was a very nice route it was interesting to see something new; it was by no means practical! BIG HILLS! Up and down and up and down. I was slightly panicking when going down them, to say the least- I told my auntie to get her camera out as there was no doubt that she could have made £250! But, with thanks to my uncle holding on to the back of my chair we made it without a scratch; we certainly did not take that route again.

Turismo Mojácar Village

During the holiday we went up to Mojácar Village and as you can see this is quite hilly so, due to my lack of confidence in my new wheelchair, I decided to walk. Having been up to the village now I am positive that I made the best decision as I would have been on edge all day. I was very tired and in a bit of pain later that evening but with a swim and a bit of physio, I didn’t suffer as much as I thought I was going to. I did see a few other wheelchair users in the village so I do reckon I would have been okay; we’ll save that challenge for another time!

I have no idea what my feet are doing either!

I am very pleased with my decision to take my electric wheelchair on holiday, as it was great to gain a bit more independence and improve my confidence! I’m aware that I’m still not the most confident driver and do not know all the tricks of the trade, but I’m learning and most importantly I’m willing to learn. I am proud of myself, to say this was the first time taking my chair abroad I think I did very well, and there were no causalities!

Let me know if you want more posts about my wheelchair adventures!

Thank you for reading,


What Going on Holiday Means to Me

Everyone needs a holiday, disabled or not we all need a few days or weeks off to just wind down and get our heads out of the game! Well, I certainly do, I’m always ready to go on holiday and in need of a break when times comes to it. So, I thought I’d tell you how going on holiday helps me because I’ve mentioned quite a few times about how tired I can get when I’m ready for a break. I like to keep myself busy, and at times despite how tired I am I still find it hard to wind down and switch my brain off but going on a summer holiday and lying around the pool really helps me and gives me the reprieve I need!

What I get up to on my summer holiday:
My summer holidays are generally relaxing pool holidays and let me just tell you when times comes to it this is definitely the type of holiday that I need and although I find it hard to switch off when I get on the sunbed I can relax. I mean not for hours as I find the sunbed very uncomfortable; having the sun on my muscles is a very good feeling. In winter I suffer from a lot more aches and pains and there are nights I come home and want a hot bath so even if it’s an uncomfortable sunbed getting on there and just letting my muscles soak up the heat is very relaxing…

But as mentioned I can’t just do nothing, so I do have to have my kindle in my hand or have my earphones in to enable me to stay relaxed a little longer. Getting into a good book on my holiday is a must for me to enable me to relax, all year round I rarely read but for those 2 weeks on my summer holiday, I become a book worm! I generally read fiction books and enjoy getting into a good novel, last year I read a book called ‘The Ables’ by Jeremy Scott, which is about superheroes with disabilities. This book was recommended to me by a friend, I would certainly recommend it too! This is the first book I’ve really read about disabilities and I really enjoyed it so if you have any recommendations please send them my way.

Photo by Perfecto Capucine on
I’ve clearly not taken this photo, I’m still getting into taking aesthetically pleasing photos for my blogs but, the drink has a straw in it so, I’m not complaining!

MUSIC!!! Music plays a massive part in helping me to relax when I’m on holiday, as in case you haven’t gathered from my logo, I’m really into music. I like quite a range of music to be honest but when I’m winding my number 1 choice must be Ed Sheeran, he’s just my ultimate favourite! My Ed Sheeran playlist is by far the longest playlist I have in my music, I know not all his song are relaxing but when I put Ed Sheeran on, I go to a different place no matter what song! However, I will certainly be listening to Lewis Capaldi around the pool this year as well his music is amazing.

I just thought I’d show you how ridiculously long this playlist is! I’m even listening to him whilst I write this blog- so holiday or not music, Ed Sheeran in particular always enables me to wind down.

But going holiday also means I get to go swimming which isn’t always relaxing; it still means a lot to me. In my last post, I talked about physio and how I’m not the best at it but of course, swimming in the pool is one of the best types of exercise for me as it enables me to get all my muscles working. Again, I don’t go swimming at home but when I get on holiday it is one of the aspects, I love the most! I’m not the best swimmer and I never go down to the deep end but just doing a few widths is enough for me and gives me great pleasure. I also really enjoy floating in the water, that I find really relaxing, I’ll admit I need support when floating but with the right support I can easily float for a good length of time!

So that’s what going on holiday means to me! Going on holiday really does help to relax me as I am a person that gets stressed very easily so not only does it help relax me physically it helps me to relax mentally, I know this for sure as I can guarantee you that when I come back I become ill because I’ve let my body to relax. But as mentioned disabled or not everyone needs a holiday!

What do you get up to on your holiday?


The Physical Complications of Getting Older

If you follow me on Twitter, then you will know that lately, I’ve been talking a lot more about how I feel the need to do more physio. I don’t live in pain every day and I feel lucky as I know my situation could be a lot different but, I still experience pain and for the past 2 months this pain has become more frequent. Therefore, I have started to up my physio and have been doing it a lot more regular- don’t worry this blog isn’t a blog telling you all about what physio I do because that would be wrong of me as we all know which therapy my interests are in but I just thought I’d share my thoughts with you. Also, I’m hoping this will be a short post as I really owe you something short for all the rambling I’ve been doing recently.

I’m not writing this blog to complain about my pain either because I don’t really have the right to- yes, some days it’s painful; I’m fine it’s not affecting my activities of daily living. I’m going to openly admit that I know I don’t do physio as often as I should and only really do it when I’m experiencing pain but since I have been doing physio regularly, I’ve seen improvements. I’ve started to step up the physio not only because of the pain but because I don’t want any further complications and seeing these improvements has made me realise how important it is to continue doing my physio. When I was 11, I had the conversation with my consultant about how my disability could affect me in the future and we discussed how I might end up having Botox’s. However, the next time I went he said that it would be unlikely that I’d need them until much later so with this in mind I just thought I’d keep doing what I’m doing because something was obviously working.

But I was a lot more active then I was still at school, therefore I was still doing P.E weekly, and a lot of extra activities outside of school. Whereas now, I’m not so active in my daily life because my circumstances have changed so therefore, that’s probably why I’m experiencing a lot more pain. A few weeks ago, I was meant to go to race running try outs unfortunately I was ill and couldn’t make it, I’m hoping that I’ll try out for it one day, I might not but it has certainly made me realise that I need to be more active. When I’m at university or on placement and have assignments to complete I do find it hard to make time for exercise and I don’t have much energy either. However, since I’ve been off and have had time to fit it in, I have realised how much I do need to stick to my physio in order to keep on track. If I do end up having Botox’s further down the line it won’t be the end of the world; right now, I want to try and prevent needing them whilst I can, and I intend to keep sticking to my physio. In September when I go back to university, I probably won’t do it as much, when I come home after a long tiring day; from now on, I am determined to incorporate it into my life as much as possible!

As I said, I haven’t decided to write this blog post because I want people to feel sorry for me but I’ll be honest right now as I sit here writing this post I am in a bit of pain (obviously my inspiration behind writing the post).However I don’t think my pain is anything to worry about for now and it’s highly likely that it’s probably just one of those days! But as I mentioned doing physio and looking after my muscles is certainly not an area of expertise.

So, how do you cope with pain?


Reflecting on My First Year at University

As previously mentioned, I have now finished my first year at university so, seen as I mention university a lot throughout my posts I thought I’d reflect on my first year to give you some insight on my experiences this past year. But first, I’d just like to say how I can’t believe that I am writing this blog already, well, I could have even written it a month ago! How scary is that? I still feel like a new student! Speaking of how fast time is going last week marked 6 months of Not So Terrible Palsy, now that has gone fast!

I’ve always known that I wanted to go to university from a young age and when I saw photos of my older cousin’s graduating I knew then, that, I wanted to wear my own gap and gown one day. So, when university finally came around in September 2018 although I was nervous, I was certainly more excited as it felt like I’d been waiting for the day to arrive ever since I saw my cousin’s graduation photos! I remember being sat in the lecture theatre thinking I can’t believe that I’m sat here and to be quite honest when I sat in a lecture theatre now, I’m still in disbelief.

However, as I said, there was still a lot of nerves and I still had a few worries as I’ve previously discussed when talking about my wheelchair and placement. I also had worries about making friends because even though I’m a very sociable person I knew that due to my circumstances, I wouldn’t be able to make every night out. But the biggest worry was would I be able to cope with the work? Would I actually be able to do a degree? Which I know seems dramatic; I still had to be real with myself and face reality even if that would be the case. However, this question didn’t come from my own doing this question came from the doctor at my occupational health appointment which I had to have to ensure that I was fit to go to university. I remember him asking me all these questions such as ‘’What would happen if a patient asks you to do something that you can’t do?’’ and to be fair I do have to be realistic and seriously consider which job I want to go into within occupational therapy but I was very distressed after this appointment. This was because I’d been getting so excited about September so when this appointment didn’t turn out how I thought it would turn out I was quite disheartened.

I knew that I was going to struggle a lot more than an able-bodied person; I just had to be more prepared. I remember how daunting my induction day was and to be honest, I didn’t have the greatest day and felt really overwhelmed but then that changed at the end of that day when the lecturer came up to me and said ”Georgia don’t worry we are going to prepare for the hard parts”. This conversation meant a lot to me and was probably the highlight of my day that day. Following this my now lecturers had arranged a meeting with my mum and myself to plan ahead and from this a lot of my worries were dealt with including a big one about not being able to do certain practical elements in which it was decided that before any practical lessons I would have a practice first on my own to save me some embarrassment. This was the perfect solution! For example, as part of my preparation for placement, I have to undertake mandatory training and as part of this, skills such as manual handling are required so, it was fair to say that I was pretty nervous starting the course off with something that I may not even be able to do. But my worries were completely taken care of as we’d come up with a plan to have a go at the manual handling by myself first which made me feel so much more at ease because I knew what I was expecting when the time came to do it alongside my peers. I still can’t thank my lecturers enough for doing this. I wasn’t the best at it but with a few practices, I was improving!

I also was really worried about the workload… Would I have enough energy to make sure that my work was up to standard? My course is all assignment based which works best for me as I’m certainly that person that crumbles under the pressure of exams; I was still worried about being able to write high-quality assignments. I guess everyone has this worry but as I mentioned for me it was also about being able to cope with the workload making sure that all my assignments had the enough amount of time spent on them as it can take me twice as long some days depending on energy levels. Now that I’ve submitted and received feedback from all of my assignments, I am pleased with the work I have done. Some assignments are better than others, so I need to work on this therefore I have been doing a bit of work on these skills during my time off whilst I have time because come September it’ll be harder. I mention this so often but I have to know my body and I know it will be hard to take extra classes in September that’s why I’m doing it now whilst I have the time to put all my energy into it!

My last worry was about living the ‘student life’ which I have mentioned a few times before. I was never worried about making friends one because I’m very sociable and can talk to anyone and two because the course was occupational therapy so, if people weren’t going to befriend me because I’m disabled, they should probably reconsider their degree. I made friends fine and I get along with everyone on the course I mean I don’t talk to everyone but not because we don’t get along but because that’s life. However, this still didn’t stop me worrying about trying to live to ‘student life’ knowing that I live a 20-minute car journey away from the rest of my friends. But as far I’m concerned this hasn’t affected me that much, to say it hasn’t affected me at all would be a lie as I’ve previously talked about; this isn’t because I don’t get invited.

Overall, I feel very fortunate to have had the most amazing first year of university which is full of memories from some great times both in and outside university. My worries a year ago now seem so small I will always worry about my work at university because that’s the person I am but apart from that everything else didn’t seem worth the stress. University will always be harder for me than an able-bodied person because that’s the way the world was designed but it still doesn’t stop me from loving it because I certainly love what I do. Roll on second year!

Thank you for reading,


Restricted Independence

Will I ever be totally independent? I’ve finished university for the summer now and I don’t go back until September- this means that I have a lot of time on hands and don’t get me wrong, I’ve spent most of my first 3 weeks off being run down. So, I’m certainly in need of a break but for someone who always likes to be busy I am scared that for the next 3 months I won’t be as busy as I want to be. This is due to having restricted independence. In my previous post about driving, I mentioned how much independence driving will give me and in this post, I’m going to explain why that independence is so important.

The whole point of this blog is to show you that having Cerebral Palsy doesn’t stop me from living my life- and it doesn’t but it does make everyday activities a lot harder! What I mean by this is that I can’t just hop on the bus to town when I feel like it, as I would need to have someone with me on the bus. Getting on the bus may seem like an easy task but when you break it down it’s actually quite complex and they’re many skills involved (I know because I had to do a group presentation on this at university). Therefore, this is not something that I am able to do independently. I still go out with my friends and socialise but if none of my friends are driving, this can cause quite a barrier! See, when I’m only going out for dinner I don’t need my wheelchair; this then causes issues because how do I get to the bus stop if I’m not using my chair? Which I know the answer seems simple just take my wheelchair but it’s not simple when you’re not used to using a wheelchair outdoors.

I’ve had an electric wheelchair 8 years now, which I know seems like a lot but when I break it down it isn’t because, for 7 of those 8 years, I just used my wheelchair indoors. It’s only since I’ve started university that I’ve been using my electric wheelchair outdoors; even still I only go around the university campus and then occasionally venture out to the nearby shops and that’s it, so my confidence is pretty low with my chair outdoors. I’m not scared but I’m still aware that I’m vulnerable! I have previously bought a new wheelchair so I do plan on getting out more over the summer- I have used it and for most of the time I was fine; I live on a hill so getting down my road is the hardest part! However, I am aware that I must work on this, and I am taking my new chair with me on my summer holiday in order to improve and build my confidence. But I’m still restricted, therefore, even though, I have the chair, it will be a lot easier to take it out when I pass my driving test and use the hoist because believe it or not my house isn’t wheelchair accessible! Which is fine because it doesn’t need to be otherwise, we would have moved; this means if my chair is in the house I can’t go out in it unless someone is around to help me get it out. I can get it out of the car now which is a lot better but, I still have the problem of the hill.

See, there’s so many factors to consider before I even leave the house- not making my life sound fun here, believe me I live a very fulfilled life! I still socialise with my friends regular but due to me finding the bus quite hard this results in us getting lifts or taxi, if they don’t drive, which works and has worked for quite some time now and I am grateful to have such understanding friends, but sometimes when I know that they’re forking out a lot more money for a taxi instead of a bus I feel a bit responsible. I also feel quite bad asking my parents to take me everywhere as I’m aware that they have lives too, this doesn’t stop me from going out, it just restricts me for example I rarely go and walk around town and not just because of the walking but, because its just such an awkward place! This also affects me when going on nights out as when I’m tired and not sober (not drunk either as previously discussed) I feel really vulnerable getting a taxi home alone. Luckily most nights out we either stay at someone’s house or I’m with my friend who lives round the corner so she always makes sure I get dropped off first but when I’m out with my friends from university, I have to get home on my own, this can be quite a stressful way to end the night because the taxi driver just assumes that I’m drunk. So, therefore this is restricting and I admit I have turned nights down with my university friends because I’m worried about getting back home alone.

I’m fortunate as I don’t feel that in my 19 years my disability has restricted me that much- I never when to the Friday night ice skating foam parties but apart from that I’ve have had a good go at doing everything else. I am also lucky to have always had amazing friends that understand that I can’t always do everything that they can do. I’ve talked about this before in the sense that it was hard when I came to and age and realised that I am restricted and I guess I worry about it now in terms of how it will affect future relationships (hopefully I’ll be driving by then). But I am only as restricted as what I allow myself to be, and as I’ve got older I have become confident and more determined to not let these restrictions take over; I am only 19 and I still have a lot more confidence and independence to gain and although I want to achieve this, this is not something that’s going to happen overnight. I am extremely happy with the life I am living and yes nothing has gotten or will ever get in my way; I’m still aware that my life would be different if my independence wasn’t as restricted.

Thank you for reading,


My Driving Journey So Far

Welcome to my driving blog post, despite saying that I wasn’t going to write this post, 2 weeks later here I am… I’ve received a few comments saying that people would like to read this blog post as they find it very useful and insightful. Which made me think that, if I’d had read a blog post about someone’s driving experience when I was 15 then I would be a lot further in this journey. So, here it goes, put your seat belt on (pun intended) because this is quite a story!

When I started to plan for college at 16, I realised that what I’d always known was about to change, because my timetable wasn’t 8:30 am-3:00 pm every day so, therefore, my parents could no longer drop me off and pick me up. This meant that I would be getting a lot more taxis and at this time the thought of being in a taxi alone made me feel vulnerable. But then I had a thought, I thought I’ll start driving lessons soon and then in the second year I’ll be able to drive, which of course made me eager to start driving. So, 6 months before my 17th birthday I applied for my provisional license, my 16-year-old-self thought that it would be enough time to get the ball rolling, not knowing what was ahead.

The first hurdle- as previously discussed as a result of my Cerebral Palsy I have epilepsy, which didn’t make getting my provisional license easy, despite not having a seizure in 12 years. But, after filling out multiple forms, 3 months later my provisional license came. This process itself took a lot longer than anticipated and started to make me realise that this course was going to be more complex than expected but, it didn’t fully prepare me. As soon as my provisional license came, we started looking for a disabled driving instructor knowing that I’d probably need a little extra support. So, after another few months of phone calls, I finally had my first driving lesson 2 days after my 17th birthday. Again, we didn’t think it would take another 3 months on top of this, and had hoped that I would have had a few lessons by this point as with being disabled you can start at 16, (clearly something I didn’t know). But I didn’t mind, it felt right as I was starting around the same time as my peers and I was where I wanted to be.

My first lesson was meant to be 2 hours but after an hour I was on my way back home as we discovered that I needed further adaptions. The next stage was to go to a centre to be assessed so, my report came through from my driving lesson and a date was made to go to the assessment centre. I was waiting to go to the assessment centre for 5 months’, but I didn’t mind because this was over summer so, I could start over summer when I wasn’t at college meaning that I could have more lessons and speed up the process. Over this period, I was told to start revising for my theory test so I did, luckily I didn’t book anything before knowing the outcome of the assessment but I thought that if I was being told to put in for my theory then it couldn’t be much of a wait.

The day had finally arrived, I was going to the assessment centre and I thought that I could see light at the end of the tunnel. The day was a very long day, the assessment centre was quite a drive away as well but, I was prepared for a long day! So, the tests included trying different adaptations as well as having reading and cognitive test you name it, I had it, and as you can tell, it was quite a draining day so I slept most of the journey home. We’d concluded that I was too weak in my legs to be able to use the break and accelerator, so we explored alternative options one of them being a lighter steering wheel which had the break and accelerator attached to the wheel. So, this assessment was useful because from this we discovered that I couldn’t use my legs and that I was cognitively able to drive; we’d not found a way for me to drive. I came out of the assessment feeling deflated as this was the first time that I’d realised that I may never be able to drive. Side note, this assessment was carried out by an occupational therapist- just thought I’d mention it!

From this, I was then referred to have another assessment with a driving instructor, the wait for this assessment was only a month and during that time I was all ready to go on holiday and just forget about driving. Once again, the day came, but this time I wasn’t that excited as I didn’t want to get my hopes up for them to be demolished again. However, this assessment turned out to be the best one as we managed to find an adaptation that I was able to use- a year later and things were finally looking up. The adaptation I found was the tiller which, works a bit like the handlebars on a bike.

I was going to insert a video but the video I have is me using a different adaptation- I tried so many!

So, it was decided that the tiller would be the adaptation I was using! However, this meant more waiting! This was because at the time there was only 2 van’s in the country fitted with this adaptation for learner drivers, therefore, this meant that if I was to have this adaptation I would have to have my own vehicle adapted first before I learnt how to drive. Which resulted in more assessments to ensure that this was the right adaptation.

With a load more of phone calls, emails and letters another 6 months went by. The guy that came was lovely and he walked in and straight away said ”You’re going to get this adaptation, our number one priority is to get you driving.” – relief, I’d not waited another 6 months to get rejected. Just an update for those not counting, the total I’ve been waiting at this stage from applying for my provisional license is now 18 months. Now, it was time to hunt for cars, quite exciting, although my options were quite limited- this is because I needed a car big enough for a hoist for my electric wheelchair, however, a lot of the bigger cars require someone over 25 to drive them so, I had very few options.

A few months went by, and we’d picked a car and got the ball rolling, little did we know that our plans were about to get knocked back again… The plan was to get the car and then send it away for it to be adapted with the tiller; that plan didn’t take off as quickly as expected as the company were having trouble getting hold of the car so we had to wait until they could get hold of the car because as mentioned all the other suitable cars required the driver to be over 25. So, at this point I’m thinking I’ll just have to wait until I turn 25 before I can drive, thinking that, that was my only option. Fast forward 4 months and we finally have a car and the adaptation process begins! At this point, I was going back a forth a bit to have fittings. Once again, the car took a lot longer to be adapted than we thought, but it had to be perfect even if that put another 4 months on!

During this time, I decided that it was time to do my theory- good job I didn’t do it 2 years ago when I got told to! So now that my theory was done, I was just eager to start driving lessons, but there was nothing I could do apart from wait – I’d played my part at this stage.

We are now up to date 34 months later! I finally have my car and have started my driving lessons! This unexpected battle (which is the phrase that I often use) has taught me a lot and even though I’ve spent the majority of these 3 years being very stressed and frustrated with the process this has been a massive learning kerb. My life is always going to be full of unexpected battles it’s just part of CP, and even though this is frustrating it only makes the result more worthwhile. After all this waiting I’d be lying if I said I that I don’t want it to all be over and to pass my test. But doesn’t everyone? Driving will be great for me as it’ll give me much more independence as it doesn’t just allow me to go to place’s, but it allows to go to places alone because then I can go in my chair! So, it will be worth it, in the end, but at least now I can wholeheartedly say that I can see the light at the end of the tunnel!

There have been so many people involved in this journey that I would like to thank! I would also like to thank my parents for literally spending days on the phone because if it wasn’t for their hard work I wouldn’t be at this stage!

I’ve previously discovered that you can apply for your provisional license from the age of 15 and 9 months so if you’re coming up for this age get applying! I wish I’d have known that!

Thank you for reading,


No Longer Being the Only Disabled Member of the Family

Welcome back to another blog post! This blog post is a family post- yes this is my third family-related post within the last 3 months. However, my family is a very close family and they have always been very supportive of me so I think they deserve a bit a credit because I wouldn’t be here if it wasn’t for their support! But this blog post is about one member of my family Tommy, one of our new additions, (I can’t say the newest because that would be a lie- my family is quite big) who has Down’s Syndrome. I wanted to write this blog, to share Tommy’s and Tommy’s family’s story and to talk about how this affects me as another disabled member of the family.

So, let’s start at the beginning when my cousin found out that she was pregnant (yeah, it’s going to be a long post again- sorry) …

This is my cousin and Tommy’s Mum- Amanda.
This photo was taken a few weeks before we found out Amanda was pregnant.

You’re probably thinking why I am starting from before Amanda got pregnant- but I do have my reasons! Last year was a very difficult year for my family, especially for Amanda so when we got the news that Amanda was pregnant it was a blessing and it was certainly the good news that everyone needed. However, when we found out that there was a 99% chance of this baby being born with Down’s Syndrome our excitement soon turned into worry.

When I first heard the news, I wasn’t sad because I for one know that disability isn’t the end of the world; I was worried because Down’s Syndrome can come with a lot of health complications, so it was fear of the unknown. However, I knew that I had to step up and be a good cousin. My sister, my parents and I all felt responsibility now as we were the only ones in the whole family that dealt with disability daily. As previously mentioned my family are a close unit so I feel responsibility whenever I get a new cousin but now I just felt like that I needed to be the best cousin I could possibly be and not just for Tommy but for Tommy’s brother Charlie, Amanda and her husband.

I started thinking of ways in which I could help my cousin’s out, and I remember subscribing to Down’s Syndrome on The Mighty and sitting there trying to figure everything out. But the answer is I didn’t need to figure anything out because Amanda was just amazing and before I knew it she’d started her own Instagram page named My Upside Down Rainbow. Amanda’s page is just incredible, I am so proud of her for starting this page. As a disabled activist, I’d already recommended a few sights like The Mighty that she should subscribe to, but I didn’t want to enforce this too much as everyone deals with situations in different ways. But the awareness that Amanda has raised and continues to raise is huge and I couldn’t be happier to welcome my cousins to the disabled activist family. I am so proud of Amanda for how far she has come and for raising this awareness.

Tommy has been in our lives for just over 3 months now and what an incredible 3 months they have been we learn from Tommy every single day he encourages me to explore things that I’ve never explored and to be a better version of myself. For example, I had my first Makaton lesson a few weeks ago and if it wasn’t for Tommy, I would have never have actively done this. I’m interested in Makaton and of course as a student occupational therapist I think this is very important, but I would have never done this in my own time. I’m not a Makaton professional or anything as due to my fine motor skills I find it quite difficult (the man who was teaching kept looking at me and I could sense that he thought I didn’t know; I just struggled to perform the actions) but the point is Tommy inspired me to go to Makaton and I’m thankful for this even if I did look like a bit of lost soul.

But it’s not just Tommy that inspires me Amanda also inspires me too (I know I know, the dreaded word that’s used too lightheartedly but I do have a point to make). Previously she posted this photo of Tommy.

This photo is adorable every time I see a photo of Tommy I just want to shout, ‘He’s my blood relative’, but it was Amanda’s words that made my day that day. Amanda wrote:

‘ ✨If you could wave a magic wand, what would you change?✨
When it comes to Tommy, we really wouldn’t change a thing. This may be a strange concept to someone on the outside who may think surely, you’d remove his Down’s syndrome if you could? You see, if we did, he wouldn’t be the Tommy we know and love, he would be another different baby. Our journey may have been a bit bumpy but it’s made me love him more fiercely. He does not suffer with Down’s syndrome as some people may think. His extra chromosome is intertwined in every cell in his body and makes him who he is and he is pretty happy with that.
I would only change the world to be more accepting of those who are different and change the negative misconceptions of Down’s syndrome.’

I’ve been writing pieces on disability for 2 years now; even I don’t think I could have chosen words that fit so beautifully than the words that Amanda chose here, and for that, I am beyond proud- this is inspirational. The term Down’s Syndrome was only mentioned to my cousin and her husband 9 months ago and yet they already have this view, and this is inspiring. I’m 19 and yet it was only 2 years since I adopted the view of my looking at my disability in a positive light. In my blogs, I often discuss how my disability is a strength but not everyone has this view, and this is okay this isn’t bad. Some days I can be doing something, and I really want my hand to be steady for a few seconds or I want my legs to not ache. These days are entirely normal, I have now at the age of 19 accepted that I don’t ‘suffer’ from Cerebral Palsy, so I think is it inspirational that Amanda wrote these words at such an early stage.

First time I held Tommy. Side note- ignore the ridiculous eyebrows we all know I struggle as previously discussed.

Tommy and I already have a great bond because we have something in common that no-one else in the family can relate too. I know Tommy is going to grow up and achieve wonderful things because like me he has the most amazing support network behind him. I hope that I can help Tommy not just as a fellow disabled person but also as an occupational therapist- but what I do know is that I am looking forward to being involved in Tommy’s life whether it be as a person with a disability, an occupational therapist or a cousin. He’s already made me a better person and taught me so much and I just can’t wait for the future (well I can wait till he becomes taller than me).

Charlie reading his little bro a bedtime story.

Much love to these amazing people, I am so proud to call you all family!

Thank you for reading!