Stories

Stories is a page where people share there life experiences and also share advice which we hope will help others

Stories



Living with Short Stature - Paige Stevenson

Hi. I’m Paige and I am 21 years old. I am of short stature; however, my condition is undiagnosed.

Living with short stature has its difficulties just like everyone’s life, as nobody’s life is perfect. Going to school was nerve-racking for my Mum and Dad just like any child starting school; however, I just went, laughed, and played like everyone else. Throughout my school years, I have made so many friends and I have been treated just like everyone else. My friends all describe me as outgoing and confident. I do not let my height get in my way.

I have a warm and bubbly personality, which shows that no matter what height you are, you are no different from anyone else. Living with short stature does have its downs at times, dealing with unwelcome glances and comments from the public. This can be frustrating at times, but with family support and maturity over the years, you just learn to ignore it or try to educate people to make them more aware of short stature.

In July 2010, I went on a month’s long journey to Borneo where I travelled across the island. During my journey I stayed in the rainforest, hotels and slept in hammocks, I also visited the Orang-utan centres saw turtle islands and met the British High Commissioner I done this as part of a group of 32 and without my immediate family travelling with me. I overcome any obstacles thrown at me with sheer determination.

Being a member of Short Stature Scotland has helped me to gain confidence and meet new friends. Socialising regularly with them has made me new friends for life. I am also the teenage contact member, which means if any new teenage members have any questions, then they can contact me.

We occasionally go out together to cinema, for dinner or go bowling. Last year, two members and I went to Dallas Texas to attend a national conference with Little People of America. I was very excited about this, as it gave me a chance to meet new people with short stature.

Finally, I would like to say that although living with short stature can be difficult at times, you just learn to lead a normal life and inspire people on the way. 


My Life Story - Richard Copeland

My life began on the 26th May 1991 in Stobhill Hospital in Glasgow. I have two older sisters who are 2 and 4 years older than me respectively. My Mum was a stay at home mum when I was born and my Dad lectures at the University of Strathclyde. I grew up in Torrance which is a countryside village just north of Glasgow. The first Restricted Growth Association convention that I attended, which I do not remember as I was only one year old, was held in Bradford. This gave my Mum and Dad their first chance to meet people with the same condition as me. They learned a lot of valuable information and found out about people who live in Scotland with the same condition as me. There was no regional parent co-ordinator for the Scottish region, so after some consideration my Dad decided to take up the role.  He organised an event was when I was 4 years old at my local community centre. At this meeting we had the chance to meet a family from Milngavie with whom I am still friends. 

A year later I started primary school in my village. I kind of forgot that I had short stature at school as everyone treated me normally. I had a classroom assistant which helped me out with things I could not manage on my own. There were little to no adaptations needed for my school, I had a special chair and a chair to sit on whilst everyone was on the floor during assemblies.  These adaptations were to help with my back because sitting for prolonged periods in an awkward position made my back very painful. During breaks and at lunch I would be involved with everyone else and had no problem making friends and playing the usual playground games.

My memories get very vivid from around primary 5 and onwards and I can remember people asking me about my height, but I never thought that there was anything wrong with me, I always thought I would have a late growth spurt coming. When I entered primary 7, I was still very much shorter than everybody else, and I started to wonder why this was the case. I can remember some people in public would stare at me and some younger kids would laugh but I didn't think too much of it. My Mum and Dad did a good job of making me very independent and this made me feel as though there was nothing really different about me. I had not attended any conventions during my time at primary school as my Mum and Dad wanted me to become very independent and to learn for myself what life was about. As I became more aware of the difference in height between me and my friends I started to really wonder why. I asked my Mum and Dad about it and they thought it was time that I should go to my first convention for nine years.

Going to my first convention was quite the eye opener as I was in a hotel filled with people the same height as me.  It was a real shock and pretty amazing at the same time. I instantly made friends and had a great weekend playing football and just socialising about everyday life and how it affects us. At this weekend I was told about the DAAUK which organizes a sports weekend every year for people with dwarfism to compete with people of the same age. At this event I entered many events ranging from athletics to badminton. During my final year at school I realised I couldn't compete with my peers as I wasn't as fast or as agile as everyone else, but at the DAA I strived and won many events and came home with a handful of medals every year. Now I was very aware of my condition and that I would be small for the rest of my life, I started what should have been the toughest time of my life; high school.

Before I started high school, I had an induction day to see what would be needed to make my life a little bit easier. Height adjustable chairs, an auxiliary helper and to be released 5 minutes early were what was decided that I need. My first few weeks of high school were the ones I was dreading the most, seeing how people would react to my height. It turned out that everyone seemed to be ok about it; my friends from primary school were also very protective of me making sure I was ok during break and lunch. After the first few weeks everyone was used to me and didn't take any notice. The thing I hated the most about school was my auxiliary, she would follow me everywhere I went making sure I didn't hurt myself. On a few occasions I ran away from her to make my point that it wasn't necessary to be followed all the time. After four years of the auxiliary, my school finally realised it wasn't necessary for someone to follow me around, so I was set free and was allowed to be independent. Every year a new dread would come up however; the new kids in first year. They would always be a problem for a while, but after a couple of weeks I was old news and they forgot about me.

I was still attending the DAA every year and in 2005 the World Dwarf games were held in Paris, France. At this event 300 dwarves from around the world competed together to be the world champion. This was an absolutely great experience and one that I will never forget. Exactly one year later the European games were held in Belfast, Northern Ireland. This was where I met my girlfriend, Emma. It was amazing to have a connection with a girl with the same condition as me, it just felt right. We talked online for ages until we finally met up again in Scotland where she was competing in a badminton competition for short statured people. We are still together after 4 years of long distance relationship.

In 2008, I sat my higher examinations which would decide my future and whether I would go to university or not. The school decided and I agreed that it was appropriate for me to get extra time and a room by myself in which I could stretch my back after hours of writing during the exams. I had my chair with a foot rest so I could support my legs to make me as comfortable as possible. The results day wouldn’t be until August so I had a whole summer of dread. The results finally arrived, and I had achieved the grades needed to get into university, I was ecstatic. Now to find the university I would be spending the next 5 years of my life. I went to open days at the universities I wanted to attend. Glasgow University just felt right for me; no one had a problem with my height whatsoever. Unlike Strathclyde University, where I just felt always on edge because the campus is in the city centre where there are many NEDS wandering about just waiting to have a laugh and a stare. So it was decided, I would be attending Glasgow University to study Mechanical Design Engineering.

During my final year of school I had made it my goal to learn how to drive. Motability is a scheme I was on that helps people with a disability get a car by giving Motability the mobility component of your DLA and subsidises driving lessons. The adaptations to my car are very minor, just pedal extensions and a pillow behind my back to push me forwards. I learned to drive within the year and passed my test first time; this made me so much more independent. I could go wherever I wanted, whenever I wanted.

The summer before I started university I decided to take a holiday to America alone. My family and I had always travelled round Europe when I was young and had been to many fantastic places such as America and Brazil, so planes weren't a problem for me. My flight was direct to Boston, so all I had to was get on one plane and get off on the other side to meet my aunt and uncle. I had decided to take my bike over as my uncle and I are avid cyclists and I had always wanted to cycle round the rural state of Maine. My bike arrived safely waiting for me to pick it up in the baggage reclaim, but it was far too heavy for me to lift. However, someone I had been talking to on the flight came over and asked if I needed help and got the bike onto the trolley for me. During the time I was there I cycled 60 miles on many different terrains.

Before I started university I had an introductory day, very similar to the one I had at my high school. I met with the disability adviser and we had a chat about what we felt was needed. The main priority I had in mind was a parking space within the campus so that I could drive in everyday as I couldn't manage the commute every day from my home village. Because I had a blue badge for my car, this was a very easy thing to arrange. I spent my first few weeks at university with my friends from school, but that all changed after I went on an adventure weekend organized by my university. This was something I dreaded even though I really wanted to go because I was being taken out of my comfort zone and forced to work with other people I had never talked to before. I started off the weekend knowing just one person but at the end of the weekend I had talked to almost everyone and had made seven close friends. The challenges that we were given were difficult, ranging from abseiling to kayaking for three miles. However, everyone was aware that I might not be able to do some things as quickly as the others, so everyone slowed down for me. They had only known me for 24 hours. It was amazing!

So, overall as I look back on my life so far it has been quite an adventure, one that has given me more opportunities than someone of normal stature. Of course there are a few days when I think that I want to be 'normal' and ask myself why it was me that was born with this disability. However, I think that I am very lucky to have the life that I have. My parents brought me up to be independent and now I'm living away from home really striving to live an everyday life and succeeding.


Coming to terms with and taking ownership of the ‘D’ word - Graham Copeland

Looking at dictionary definitions of the word ‘dwarf’, they seem to be well behind the times. They are insulting to people of short stature and reflect a background in folklore rather than paralympic medal winners. This burden from the past leads many people to be unable to use the word comfortably to describe their condition or that of a friend or family member. However, the recent high profile athletes and award winning actors who do use the word and the change in attitude of young adults with achondroplasia such as our son, demonstrate that it is now a positive statement of ‘who you are’ to describe yourself as a dwarf. Positive use of the word is changing the accepted definition. The people who need it are now taking ownership of the word.

Our experience started 22 years ago with the birth of our son. After a difficult birth and an indication from the medics that his legs were not in proportion, I entered a few days of denial. A full body x-ray finally confirmed the diagnosis of skeletal dysplasia due to achondroplasia. It was explained that he would not grow to average height and the word ‘dwarf’ was used by medical staff. We then banished the word from our thinking about him. Our concern over the coming couple of years was whether or not he would be able to walk, such was the degree of hypotonia (floppiness due to poor muscle tone).

By good chance our health visitor, who knew our family well after the birth of our two daughters, told us about the Restricted Growth Association (RGA). I phoned Dr William Shakespeare, who was a surgeon who had the same condition, and he was a wonderful reassurance for us, indicating that a positive future was very likely. This was helped further by our attending an RGA convention when he was one year old.

Also by chance, we met another family about this time who had a child with achondroplasia. She was older than our son was and was walking well even though she too had hypotonia when younger. Without these two contacts, we would have continued to struggle on alone.

He developed physically in the way that most children with achondroplasia do and we brought him up to be as confident as possible, such that he was very happy at mainstream primary school (where some adaptations were made for seating and access). During this time we carried on without much contact with other people with restricted growth and never used the‘d’ word. Indeed I didn’t like to hear the word spoken even when dwarf conifers, for example, were mentioned in gardening programmes! 

This started to change for all of us when we went to our next RGA convention and soon afterwards to our first dwarf sports events organised by, as it was then, the Dwarf Athletics Association UK (now the Dwarf Sports Association UK). We waited to get involved with these groups until he started to ask questions about why he was smaller than other kids were. This was what felt right for us, other families attended from a much younger age. These events were a huge boost too his confidence and to our understanding of how people with a range of restricted growth conditions get on with their lives. We also started to use the word dwarf in a positive way. Our son also started to think of himself as a dwarf and to develop a positive self-image using that label.

This process continued through his teenage years. Now at Glasgow University he readily uses the word to describe himself and what he is. He has taken ownership of the word and is dispelling its outdated meanings. I think he is brave to do so. He is developing a strong confidence about his degree course and future career but at the same time doesn’t like walking around Glasgow in school holidays. In contrast, when visiting London for work experience or New York to see his uncle and aunt he is quite comfortable walking around the city. Such are the levels of ignorance and rudeness still out there in some places. Let us hope that positive role models for dwarfs such as Peter Dinklage and Ellie Simmonds, the good work of support groups such as Short Stature Scotland and the courage of the young adults to know who they are, will make it cool to call yourself a dwarf.


Eoghann's Story

Hi, my name is Eoghann.  I have Acondroplasia and I am about 4ft /105cms tall.  I live near Fraserburgh in the north east and at the moment I am attending 3rd year of secondary education at Mintlaw Academy, but at least it is mainstream education and they did not send me to a special school.

So what is it like being a person of Short Stature? To be honest, in my opinion, it is not very good – at least not at the moment. The biggest problem is the aches and pains in the lower back and legs, which stop me getting about like other people of my age group.  I have special transport to school; it just takes a little longer, which makes it a very long day

The other main problem is reaching things. The easiest way to get over this is to use a step. This gives you height, but if something is at the back of a shelf or worktop, I have to climb a little.

The best piece of special equipment is a set of plastic steps or stools. It helps you do all types of things that you want to do. Another piece of equipment that I have is a trike recommended by a social worker, but I never use it on the road. Our roads are not very good and I cannot ride it very far, because of my legs.  I am allowed to use the lifts in school as I have difficult in climbing stairs. They did get me a platform and a special automatic chair, but I do not use them because they are too tall for the tables the school uses. The best chair I use is the one that the school crafts teacher fitted an extra bar on to rest my feet. If you need help with equipment, ask the people who know, the ones who have short stature problems themselves. Occupation Therapists can help, but don’t always understand the problems.

I receive a lot of name calling and bullying, but mainly from my own age group, which stems from a lack of understanding and general ignorance. Many adults just have a look and then ignore me. I have had to learn to ignore it, but it still hurts.

The various conditions that cause short stature can also stop you doing some things like sport and some activities at school, but I will be able to take my driving test next year - a year earlier than the average person can and that will make them take notice.

There are good things about being short, not many, except when I meet with people with the same problems, then there is no difference and we all muck in together and try to help each other out.


First Impressions - Liz Scott

First impressions are very important; they can have a positive or negative effect on someone. Fortunately my own experience was a positive one.

I am 37 years old and I have a growth disorder called Achondroplasia. I was brought up in a small village where this condition had never been heard of before; even to my doctors this was something new. I am very blessed to have two strong and wonderfully committed parents who have made me what I am today and someone I can be proud of myself. I have been in full-time employment since leaving college 20 years ago and at the moment I am working with the local council. I have been driving since I was 19 and now own my own flat and leading a "normal life".

It was just a couple of years ago now, after many years of coaxing from my mum that I decided to do some research about other people with the same condition as myself. As a youngster it was something I felt I didn’t really need in my life, as all my friends and family were of "Average Height". My mum always said she would have really liked someone to talk to when I was "growing up", as she felt quite isolated because she didn't know anyone else who had this condition. She said "its not a case of what they can do for you" but "what you can do for them".

After considerable thought, I realised that my mum was right, now that I was older and had some life experience I decided I could share this with others. I started the ball rolling and went onto the Internet to see if there was any support locally. The only thing I found was the RGA where the majority of people were English based. Then I was put in touch with Jackie & Ronnie Millan who lived about 30 miles away, she and Ronnie kindly offered to come to my house to meet with me as she sensed I was very nervous. I had never met anyone with my condition before and I really didn't know what to expect or how I would feel looking at a mirror image.

Thankfully my first impression of Jackie and Ronnie was a positive one, it was great to finally look at someone straight in the eye, so to speak and although I was still very nervous, it did not put me off wanting to find out more. Since that time I have now met a lot of other people who have Achondroplasia and other Short Stature conditions. I am now involved with Short Stature Scotland.

Our support group is designed to help families come to terms with their condition and also to provide information or even just to have a chat and a laugh. It's comforting to know that with all the challenges and insecurities that come with life, I can talk to someone about them and discover that they also have the same thoughts and experiences that life brings. I know it can be daunting going into the unknown but once you have taken that first step, I guarantee you won't look back, I wish I had done it years ago.


David's Story

Living in rural Scotland meant that I had rarely seen anyone with restricted growth (RG) let alone talked to them. I was born in to a family where both parents were of average height as were my 3 brothers, my disability was never an issue within my family and friends, and rarely in my school life was it an issue either.

I finished school, learnt to drive and started working, again, just the same as everyone else. The big wake up call for me was the BBC’s One Life documentary featuring Caroline Miller from Jersey who has Achondroplasia, which was broadcast in October 2003. This was a real eye opener for me and quite shocking too. It followed Caroline, who like me had never met anyone with RG, as she attended her first DAA games and then as she went to the Little People of America convention.

At the end there was a number for the Restricted Growth Association (RGA). After talking it through with some of my close friends who had also watched the programme, I eventually (months later) picked up the phone and had a long conversation with Sandy Marshal who was very calming and knew exactly the emotions I was feeling at this time.

Sandy put me in touch with Jackie Millan who at the time was the RGA’s Scottish co-ordinator, after speaking to Jackie on the phone a few times she invited me to her house to meet with her and her husband, Ronnie, and their son, Darren. Although I was very nervous in my 2 hour drive up to Glasgow I needn’t have been as I was made to feel very relaxed by Jackie and the others. It’s kind of difficult how to put it other than it just felt very comfortable speaking to adults who are at the same eye level as you.

This then led to me spending a weekend in Glasgow at an RGA event, which Jackie organised in September 2006. A very big hurdle for me as here I was in a whole room of little people, but lots of people took the time, especially Jackie, Ronnie and Darren, to speak to me and put me at ease. A very positive experience on the whole, but I did have a few wobbles over the weekend as it really was very far out of my comfort zone.

Obviously living outwith the central belt any events for me do involve a fair bit of travelling, and also as I work full time and have a fairly busy social life I do find it difficult to attend all the events that have been arranged but I am glad to be a member of Short Stature Scotland as it is very comforting to know that I am not alone.


Kate's Story

I had a wonderful birth, no drugs, no gas and air, no terrible pain. I felt pretty amazing as I held my little boy against me. I can even remember his newborn smell like wet rust. I said, "Hello" and scanned over him as every mother does. I noticed his differences before anyone else - 6 toes, 6 fingers, short arms. At this point, I even felt myself rein in my emotions.....Should I get attached to this little baby? Is he viable? Is he all there? As he stared at me with dark violet eyes, I knew he was, but I wanted to hear it from the paediatricians who checked him over that night - 3 in total and no diagnosis. No one mentioned dwarfism, but I knew from the length of his limbs that he was a dwarf, a little person. You never really know your true feelings about human conditions until you are faced with them so personally. I think I must have had a reasonably positive view of dwarfism before I had Angus, because although it was a shock, I was surprised at how little it bothered me.

We got his diagnosis the next morning - Ellis-van Creveld syndrome (EvC). Eh?? Wassat then? I felt at a bit of a loss away from my usual source of info, the Internet, and had to rely on the docs. The biggest blow was learning he had a heart defect after a scan at Yorkhill when he was 2 days old. I sobbed uncontrollably when I got back to the car. Dwarfism seemed so unimportant in comparison. "Take him home. Treat him like any other baby. The heart surgery will wait until he's a year old." So, we went home, and we treated him like any other baby. He was a completely adorable, alert, and easy baby. We had 3 wonderful weeks at home before his health started to fail. He went into acute heart failure, and we watched him fighting for his life in A&E at Yorkhill before being paralysed, sedated and put on a ventilator.

5 months in PICU, 12 months on the long-term vent ward, 2 heart ops, tracheostomy and Nissen fundoplication later, we got him home. During this time, I sought out knowledge obsessively. I searched the Internet for articles, books, people tall and small, developed a website for parents of kids with EvC, started a message board and got in touch with experts in EvC around the world. It helped me feel less helpless at the time. I watched any program I could find about dwarfism. I wanted to know how people with dwarfism viewed themselves. I wanted to know how society as a whole viewed little people. I challenged my own views of little people. As disabilities go, it didn't seem too bad to me. OK, Angus was going to be short, but his brain worked and he had full control of all his limbs. He could become a productive member of society and be fully independent - if he survived. The latter matter was our most pressing concern at the time.

Once we'd got to grips with his home care, we started going out more, and I felt that we really had to meet people who either had restricted growth, or who had children affected by it. I wanted Angus to know people like him as he grew up. I knew that I wasn't going to have a clue about some of the things he would experience as he grew up. Sure, I could empathise with a bit of imagination, but there's no way I could know what it's like to look so clearly and unavoidably different wherever I go. One of my online acquaintances had said that he didn't like seeing other people like him because he didn't picture himself looking achondroplastic. It was always a shock to his system to see someone walk that way, stand that way, and realise that he did exactly the same. I think it was this most of all that made me determined for Angus to be familiar with other small people from early on so that it was never a shock looking in the mirror. I wanted him to have friends and positive older role models so that he would be happy in his own skin, so that he wouldn't feel negative about being small. I love him the way he is, but hey, I'm only his mum and you know how little that counts for anything as your kids get older!

I found out that the RGA was having their first Scottish get together at the Campanile Hotel. I got in touch with Jackie Millan and she phoned me to give me lots of details. I decided to go along to the first night before the main event on Saturday because I needed to dip a toe in the water. I was really nervous about going. I didn't know anyone really and I had a few concerns, which seem silly now. I'll list them anyway, because I'm sure that I'm not the only average height parent who felt this way prior to a small person gig.

  • I am quite tall and very clumsy. I had this fear of stepping backwards and falling over someone and hurting them. I had visions of myself landing on my bum on the floor with some poor small person squashed under my legs while surrounded by stares from disapproving faces.
  • I am not very PC and tend to suffer from "Foot in mouth" disease. I was really worried that I was going to say the wrong thing and embarrass myself utterly by offending or hurting someone's feelings.
  • I was worried that I was going to meet a small person with a very large chip on their shoulder who would take offence to everything I did and said (OK, a bit of a variation on the theme above, but even worse!).
  • Someone with EvC had told me how he had been shunned at a Little People of America meet because he didn't have achondroplasia, and was taller than usual for someone with restricted growth. I had visions of being told that we shouldn't be there because Angus was the wrong sort of little person.....how ridiculous!!

I steeled myself to go because my kids' wellbeing is the most important thing in my life. I was prepared to suffer any embarrassment or difficulty for both of them. Both of them? Well, I wanted my average height daughter to be familiar with small people and to have friends who knew what SHE was going through too. (Oh yeah, one of my other worries was that she was going to stare lots, point and say very inappropriate things. The little chat we had before going - "There are lots of different types of people who are all different shapes and sizes. Learn to deal with it...." - must have worked because she was fine.) So, we went along. We were greeted by Jackie, Ronnie, and Arthur, who were so warm and genuine; I deflated pretty instantly. Angus was still fairly unstable at that point so I was stuck in a chair with him on my lap for most of the evening, but people were kind and came to talk to me rather than me having to get up and mingle. My daughter soon overcame her shyness and was running about the foyer with kids of different ages and sizes, squealing and laughing, in a very short space of time. It was a very reassuring sight, and was one of the main reasons I started this journey. We met another family who had a child with EvC, the following night. Their son will be a great role model for Angus as he gets older - he does very well in the Dwarf Athletic Association events and is extremely active. I thought it was really lovely of him to chat to us and to Angus. I was struck by how relaxed and socially confident most of the teenagers were. They were all sizes - it didn't matter. We made friends with Kate O'Gorman (Vice-chair Short Stature Scotland) and her family - a lifelong friendship I'm sure. Our kids played together that night, and have done at numerous meets, afternoons, Sunday lunches and birthdays since.

We have been to other events since. We even made it down to an RGA convention in Crewe last year. Watching gaggles of teenagers arriving and meeting each other enthusiastically in the foyer, taking pictures, swapping phone numbers was very reassuring for me. We all want our kids to have successful friendships, and closer relationships. It wasn't hard to see that both of these could start at events like these. Before the disco they were all done up to the nines, so happy and alive and excited. I want that for my son. Yes, I know he can have that in the "normal" world, and hopefully he will, but I want to give him every chance, every opportunity to have a happy, fulfilled and positive life. I want him and his sister to have friends of all sizes who understand what they are going through at different stages, and to have fun. I want to share my experiences and hopefully help other people by doing so too.

As a family, we have all benefitted from meeting other families affected by restricted growth conditions - mainly because we DO have fun, and we've met interesting people and made great friends. We get support when we need it and give support in return when our friends need it. I know that our friends will ease the difficulties of the coming years, and that the meets will provide a safe and welcome respite from those difficulties. I am so glad, so grateful that we have that. I know that Short Stature Scotland will be able to provide many new families with the same support - you just need to take a deep breath and jump right in!