- First Impressions - Liz Scott's (committee member) story of meeting people with restricted growth for the first time
- David's story
- Kate's story - How I became a mother to a child with restricted growth, and what benefits my family has reaped from becoming involved with Short Stature Scotland and meeting other people affected by restricted growth.
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 didnít 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.
Liz Scott - Committee member, Short Stature Scotland
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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 BBCís 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 RGAís 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 neednít have been as I was made to feel very relaxed by Jackie and the others. Itís 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.
David - member, Short Stature Scotland
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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!
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