ASPECTS

June 2000

Contents
Chicken Shed Theatre Company
Thinking of going to University? Then read on
SOUND FAMILIAR?
My experience of having a daughter with TS

Chicken Shed Theatre Company

My name is Joanne, I am 18 years old and I have TS. I was diagnosed at birth. For my last three years at school I attended a special school, on leaving, my teacher said she thought it best for me to go to college to learn "Life skills" e.g. making cups of tea etc. But I fought against it and I said I wanted to do a BTEC in Performing Arts, and I am glad I decided to. I am studying this at the Chicken Shed Theatre Company where I have been a member for the past five years. The theatre has helped me gain in confidence and independence, gain friendships and an understanding of others. I am currently working towards a final end of year production in June of Federico Lorca's passionate and intense play "Blood Wedding" which combines dance drama and music.

Last April I performed with the Youth Company (ages 16-25] in an adaptation of "Oh What a Lovely War". The play examines through anger, pathos, laughter and tears a very moving story, set during the First World War. I played the part of "Junior Officer". Over Christmas I took part in a production of "Sleeping Beauty" adapted for the Millennium. Sleeping Beauty falls asleep and wakes up in the new millennium. I played the part of a good fairy "Starry Quiet". I thoroughly enjoyed the experience of being on stage.

Unfortunately my course ends in July. I will still a be member of the Chicken Shed Theatre Company, and I want to continue to be involved in the experience of being a part of such a wonderful caring environment. I am also so glad that I did not take my schoolteachers advice! I hope to go on and study childcare once I have finished my BTEC studies.

[For further details of the Chicken Shed Theatre Company phone Administration 020 8351 6161 Box Office 020 8292 9222 for current & forthcoming production information]

Thinking of going to University? Then read on.

Students with TS can make it at University too!!

When I was informed I had a confirmed place at Cardiff University to read English Literature and History, I was naturally over the moon, but my jubilation was also tinged with a certain amount of apprehension. I would be living away from home for the first time, with a bunch of other people I didn't even know if I'd get on with. I had little cooking knowledge, and the chances of me being in catered accommodation were slim, as only one of the six main residences was catered. I would now be having to buy and cook food for myself, do my own washing and ironing, and make new friends. All at the same time as getting to grips with the university way of studying, organisation of work and making sure I knew when all deadlines were. Even this part was going to be new and strange for me, as I knew from my brother that the approach to studying at university is nothing like how you are taught in school.

I had all these worries going around in my head as my parents drove me down at the beginning of term. As it turned out, a lot of my fears proved unfounded, and although I will not be sharing accommodation with any of my flatmates from this year once we go back in September, we have all got on together reasonably well, and there have been no major disagreements! There has naturally been a lot that has been new and a bit strange for me, but in general none of them have been as daunting as I feared they might. Coming from a rather small, quiet country village, moving to the city was a big eye-opener for me. One of the first I came across were nightclubs. Where I come from there are not really any worth raving about, and I had never been tempted to go. So it was in Cardiff, therefore, that I got to go to my first nightclub. I was naturally nervous and unsure as to what it would be like, but it turned out to be great fun – even the bouncer tried to chat me up as we were waiting to go in! I also have found, like many students, that I have developed a taste for cider since coming to Cardiff, unfortunately, however, as my flat mates never let me forget, I have also found out that headstands are just a bit more difficult after three pints of Strongbow!!

When I first went to Cardiff home seemed like a thousand miles away. In reality, however, it would only take me about an hour and a half to get home on the train should I want to come home for the weekend. Even this, however, was daunting for me, as I had never really travelled on my own before. After doing it a couple of times, I am now a lot more confident about train journeys, and I even took myself off to Bristol the other weekend to visit my friend who is at University there. I have had to deal with platform changes, trains being terminated - and still manage to get where I want to! Just like travelling, so finance hasn't been the fear I thought it was going to be. As long as I make sure I keep track of exactly what I have in my account and what I am spending, I find that I'm not doing too badly- I haven't even got as much of an overdraft as most students seem to have.

One major concern that I did have on coming to Cardiff, as most of those with TS will probably appreciate, was the fact that I had to change doctors. The university insisted that I enrolled with a GP in Cardiff. I was naturally used to my GP at home and would have liked to remain with him. At first it was a bit strange, I had to use an A to Z to get to the surgery the first time and because they did not have my notes initially, I had to explain to them what TS was and what medication I was on. Also at first I was not given a repeat prescription, so had to make an appointment with the doctor every time I need more medication. Now that everything is settled and things seem to be going quite well and my doctor in Cardiff does at least insist on checking my blood pressure every couple of months because of my medication which my local GP didn't do.

During 'freshers' week I joined a couple of Societies one of which was a great success the other was not. The lifesaving club I joined was brilliant, and since September, I have gained several more awards, two of which had to be completed in the sea. I had to travel to Barry to take them in October, when you can imagine how cold the sea was!! The support I have received from my instructor has been amazing. She is hopeful that by the end of the year I will have built up enough stamina to attempt my distinction award, which is the only award left for me to do. I hope next year to join some more Societies as I have found this has been the best way to get out and meet people with similar interests. So, after all this socialising, how you may ask, am I actually finding the course? Well, it has been mostly enjoyable, although I fell asleep during the lectures on archaeology I had to attend! I have found that I have had plenty of time to get essays in on time and do any necessary research. This year I only have an average of seven and a half hours each week of actual teaching. If anything I have found this not enough, as the incentive is always there to put off doing what you've got to do because you feel you have plenty of time, and that opens up the possibility of forgetting about it until the deadline looms close.

In general I have found university life a challenge, but not one that is beyond me, or anyone with TS. I have never really found my short stature a problem, and if anything, it is less so now that I am at university. At university, people seem to be much more tolerant and understanding about any height problems than people at school. I certainly found that my height has been less and less commented on as I have grown up. What I would like people to realise from this article is that they shouldn't let having TS hold them back. If they think they would like to give university a go they should not be afraid to do so. However, they should also not be afraid to ask for help should they need it. I have been lucky so far, and have not needed it, but I do know exactly who to go to should I need any later on, and I know that the help is there.

SOUND FAMILIAR?

My daughter has Turner Syndrome. She was diagnosed at 4 years old, started growth hormone at 5 and has had the usual run of "complications" related to TS - eyes, ears etc. She is now 10 years old [11 on 30 July], and is a lively, happy, likeable, loving child, and a joy to have. She is also clumsy, accident prone, noisy, messy, has tantrums and is a chatterbox!

We became slightly concerned about her schoolwork, mainly because she was putting in a huge amount of effort, and not seeming to get the results. It is difficult to describe, but I felt that she had it all "up top", but couldn't seem to get it down on paper. Maths is her worst subject, as I believe it is for many girls with TS. She is brilliant at reading, devouring whole books in hours, and generally good at spelling but constantly makes silly mistakes.

I mentioned my concerns at one of her growth clinic appointments, and she was referred to a psychologist, who in turn referred her to a psychiatrist (long story). Anyway, through this route, Amanda was diagnosed with Attention Deficit Disorder (without Hyperactivity). This came as a bit of a shock to us, as I was expecting her problems just to be down to TS. I have to say though, that the procedures for finding this out were fairly exhaustive, contacting the school, us and her tutor (we pay for extra maths tuition), and also speaking with and observing Amanda, so I have no reason to doubt the diagnosis.

At the back of my mind, I felt there must be a connection with TS but to date this hasn't been confirmed. The psychiatrist told me that 10% of the general population have some form of ADHD (Attention Deficit Hyperactivity Disorder), and 1% severely (needing treatment), so it must follow that a similar proportion of girls with TS will have it.

The symptoms that Amanda has are mainly grouped under the title "Inattentive" and include the following:

Fails to give close attention to detail (makes mistakes)
Difficulty sustaining attention to tasks
Does not seem to listen when spoken to
Fails to follow through on instructions, or to complete low reward tasks
Difficulty in organising and planning ahead Dislikes tasks needing sustained mental effort
Work is often unfinished

There are also two other titles,

"Hyperactivity":

Restlessness, "fidgetiness", gross bodily movement (tics)
Inappropriate movements, volubility, "out of seat"
Vocalisation (unusual)
Insomnia, Restlessness
Excessive talking
"Impulsivity"
Rapid inaccurate responding to tasks (make mistakes, jumps in)
Inadequate stimulus control (easily distracted)
Delayed gratification -v- immediate reinforcement (not good at waiting for a long time for a reward - wants it now)

There are many other "symptoms" of ADHD or ADD (- H), and so far as I understand it anyone could have one or two of the above symptoms, it is only when they are in excess and cause a problem that ADHD is considered (and only by a trained Paediatrician/Psychologist).

I can't believe that my daughter is the only one that has this disorder, and I am also very interested if anyone knows if there has been any research that may show a link between TS and ADHD.

If anyone has any information, or whose daughter shows similar symptoms to those listed above, or if anyone has an opinion, I would be very interested to hear from you.

[Please write to the TSSS, if you have any suggestions or comments regarding this disorder and possible connection with TS.

My experience of having a daughter with TS

Mary was born at home, and no trouble really despite being a breech birth. As this was not expected she had not been turned. Her feet were badly swollen so were her private parts but the doctor said that this was because she was breech and had been squashed in the womb in an awkward position.

She was a happy, contented baby an excellent toddler, always happy, loved school, very small but so am I so I never had any reason for concern.

It was her primary school teacher who suggested we consulted a paediatrician as she thought she had a long back and was out of proportion. Hormone deficiency was suggested.

Tests were done at the local hospital and she was then transferred to Great Ormond Street under Professor Tanner when she was 9.

When TS was diagnosed I was shattered. I love babies and children and could not accept Mary probably would never have children and I would never have grandchildren. I was bitter and angry because I thought I had done everything right, breast feeding until 10 months old. Solid feeding was difficult but she had tonsils and adenoids out at 5 years old so was slightly better.

Because I was bitter at first it took a long time to come to terms with the fact that Mary had TS but then you start to look for other points. She has a lovely personality and is a great daughter. She was a good teenager; no major fall outs and I'd like to think that we are the best of friends.

All in all it's not the end of the world, which is how I felt in the beginning.

[Thank you Jenny for sharing your story a lot of other Mums might have felt the same at the beginning too]