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!


Why I Study Occupational Therapy

I have been considering writing this blog for some time now and this is for two reasons. The first reason being that I just feel that I need to explain why I was drawn to occupational therapy and the second reason being to discuss my future with occupational therapy. But on the other hand these two reasons were the same reasons why I didn’t want to write this blog as I shouldn’t feel that I need to justify why I study what I study and I didn’t really want to discuss my future without knowing what the future holds. Then I realised that this blog post would be a great blog post to refer back to in the future and could potentially be a learning kerb so I thought I would give it a go, and at this minute whilst I’m sat here writing this I don’t know where this blog post is going to end up! So just stay with me because I do have a point or two to make!

Here we go point one and before I make this point, I am sorry if this comes across in a controversial way but this is a question that I have been meaning to answer for quite some time. I’m not going to bore you with all the reasons why I chose occupational therapy and why the course stuck out for me. But just for a bit of background information – occupational therapy was the right course for me as I’ve always wanted to explore the field of healthcare. OT also entails a lot of problem-solving as sometimes with occupational therapy the answer isn’t right in front of you so seen as I love maths (sorry I’ve mentioned it again) this felt great! Not to mention that the signature colour for occupational therapy is green just like CP I mean can it be more perfect!

However, the aim of this blog is not to rewrite my personal statement the aim is to answer a few questions that I have been asked around occupational therapy since starting my university journey. So, let’s get the big question out of the way… ‘Why go into the system when you’ve just come out of it?’. I have been asked this question few times, sometimes it hasn’t been as direct as others but I’m capable of reading between the lines. I find this question quite annoying especially when it’s someone I’ve just met because it just makes me aware that I am probably never going to stop answering this question. Apart from the fact that I might not even go into the system (which relates to point two), the thought of potentially going into the system and changing people’s life makes me feel even more determined to complete this course. This is not because I want to change the system. A big reason why I want to go into occupational therapy is because when I was younger my occupational therapists were just phenomenal and they played that much of significant role in my life, that they inspired me to go for this career. If I can make half the impact on an individual that they’ve made on my family and I then I know it is all worthwhile.

The other questions I have been asked, have been around my capabilities within occupational therapy, these questions don’t annoy me as such because yes, my disability will always be the elephant in the room; again, this is based on so little understanding. Occupational therapy is such a board profession as you could be working in a clinic or hospital or you could be working in a driving skills centre. So, I think eventually I’ll find an area of occupational therapy that I want to work in, I’m not saying that it won’t be harder and that my options aren’t limited because it would be wrong of me to think that they weren’t. But I know that there is certainly a role in occupational therapy out there for me, that works with my needs.

This then links on to point two… I’m only in my first year at university so I don’t have my heart set on an area of occupational therapy just yet but I have a better idea of what areas I want to and don’t want to explore than I did a year ago. A few weeks ago, I did a presentation about my blog, I wanted to make this presentation slightly more interesting and wanted to talk about more than just blogging. For a while now I’ve said that I’ve wanted to link occupational therapy in with blogging, so I had the idea of doing research about the impact of occupational therapy online to incorporate this into my presentation. Then after researching, I found that there wasn’t much around this, and I realised that this maybe the area suited for me.

As you probably know if you follow me on Facebook this presentation was done recently therefore, I haven’t really had the chance to investigate this any further. However, prior to this I had also had a discussion with my university lectures about linking blogging in with occupational therapy, and from this, they had advised me to write this blog. I’ve been towing with the idea of writing this blog for sometime now because I didn’t want to tell everyone about my future in occupational therapy without knowing what would happen. I asked myself a lot of questions around this with one of the big ones being ‘Where am I going to start?’ and therefore I decided to write this blog because this is where I am going to start. I can’t start something without a general idea of where it’s going to go just like I’d built up my work online before starting Not So Terrible Palsy. So, this is me starting my journey within occupational therapy!

You’re probably thinking why this blog is named Why I Study Occupational Therapy and why did I talk about this if this is not the main reason why I wrote this blog. This is because the reasons for studying occupational therapy is also listed in point two as well as in point one, even if it doesn’t seem apparent. In my first blog post, I wrote ‘I believe that I was born with Cerebral Palsy for a reason’ and from my previous work, I’ve realised this reason could be to create a link between the online community and occupational therapy. I study occupational therapy as I can bring to the table my personal experiences as well as professional experiences and this how blogging links into it even if this link isn’t visible yet. So, now that I’ve almost finished my first year, I can finally say that I know all the reason’s I study occupational therapy and why I’m more than willing to go back into the system!

As previously mentioned, I don’t quite know how and if this idea will work but what I do know is that I am very determined to get my idea off the ground!

Thank you for reading, I did warn you that it might be long!


Having a Little and a Big Sister!

This blog is dedicated to my sister, best friend and the reason behind the name of my page, Matilda.

As I have gone into occupational therapy and have got older, I am more aware that having a disability has an effect on other non-disabled siblings and I know that over the years my needs have meant that I have had to have more attention than my sister. But I’ve never heard Matilda complain once about this! Matilda does things to help me that I could never do for her, this is a bit disheartening at times because I’m the older sibling and I should have been the one looking after her instead of her looking after me; this has only brought us closer together. There is 15 months between myself and Matilda, which meant that due to my CP we reached quite a few developmental milestones at around about same time, for example walking and due to this, it made us closer. Matilda and I have always been close, and we always will be, but we are closer because we’ve had to deal with quite a lot, some of which most sisters won’t have to deal with in their lifetime, therefore these experiences only make our relationship stronger.

As a young girl I’d always envisaged that I’d be the one doing Matilda’s hair
and makeup, and that I’d be the one painting her nails; then I came to the
realisation that, that was never going to be reality and that in fact, it was
going to be the opposite. Matilda has always helped me to achieve these activities rather
me helping her, and I will never forget this. Rather than me teaching her how
tie her shoe laces she taught me, and she would always stop to watch me try and
conquer whatever task big or small, even coming up with ways to make the
task easier! Just recently she bought me chunkier brushes to help me with my makeup,
she saw me struggling and then acted upon this, and I will be forever thankful
for this. These little gestures mean the most. The police came into her college
recently and did a talk about safety regarding contact-less cards, and they got
given a cover to protect their cards; Matilda came straight home and said that I could
have hers because I’m a much more vulnerable target. She thought of me and put my
needs before her own, she probably thought this gesture was nothing, but that
gesture made my day that day.

I’m lucky to have this amazing support network around me, with all my family members not just my sister; I don’t give Matilda enough credit, she never asked for this life! Yes, I understand it’s a different situation because she’s never known any different, but I will still always appreciate how she’s dealt with what’s been thrown at us. Having a disability doesn’t just affected me it’s affects the whole family dynamic; Matilda has just accepted this dynamic and embraced it. Yes, at times, I may make her do my makeup when it’s the last thing she wants to do, but we make this fun she always finds a way to distract me so that she can do my mascara and those fiddly aspects! At the end of the day she takes my bracelet off and this is means a lot to me, more than she will know. I studied psychology at A-level and Matilda is currently studying psychology and whenever she  asks me for help with revision, and I get excited than most because I am actually helping her with something.

I am very fortunate to have a little and a big sister all in one as not many people can say this! I have always used this term and Matilda uses this term for me too as it does tell people a lot about our relationship, however our relationship isn’t just made up of Matilda helping me out, we do have laughs and jokes too just like a normal sisterly relationship! We do spend a lot of time together, and like any other relationship our time a part is good too because we still have our disagreements. I know that at times I perhaps rely on Matilda to much; then other time she can almost insists ‘Georgia just let me do that’ (knowing full well that I’ll be trying for half an hour). I’m so thankful we’re close in age as I don’t remember life without my sister helping me, even though I do wish I could be more of a big sister to her, I wouldn’t change our relationship because this is what makes our relationship mean so much. Matilda, is the first person I talk to in a morning and the last person I talk to at night, and I wouldn’t have it any other way!

Thank you for reading,

Happy early 18th birthday sis, can’t wait to take you for cocktails!