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All members are asked to attend this important meeting where we will be voting for the Chair and up to four trustees. The post of Chair is for one year and that of Trustees, three years.
To be eligible to vote at the meeting, you need to be a Parent Member of Down Syndrome Liverpool (either the parent of a person with DS or their legal guardian) and aged over 18, or be a person with Down syndrome, again, you must be over 18 to vote. All other associate members are welcome to attend but will not be able to vote.

Anyone wishing to nominate themselves or nominate someone (with their permission) for the post of Chair or Trustee should reply to the secretary not later than 12th May 2004 .
Further information can be obtained by contacting the secretary by telephone, post or e-mail.

Down Syndrome Liverpool officially “took over” from the DSA branch on 10th June 2003 when the old branch was wound up.

During its first full year, DSL had a hectic time during the latter part of 2003 when, together with the SEN Forum, we campaigned vigorously for speech therapy provision to be introduced into secondary schools as a matter of urgency. Previously, speech and language provision stopped when a child left junior school. This, together with the additional input from those parents who complained directly to the LEA ensured that the speech and language provision was in place for the start of the September term 2003. We have had no reports from any members with children in secondary school that this provision is not being met so we must hail this as a success. (That of course excludes those who feel the provision could be improved - that fight is for another day).

I would again emphasise that all parents should ensure that speech and language therapy is in the correct part of their child's statement and is fully quantified. The change of attitude by the LEA is NOT retrospective and will only be changed if it is brought to their attention. Please do not make the mistake of thinking that because your child is receiving speech and language therapy regardless, that it will continue. With increased spending on speech and language therapy, those who are statemented to receive it as an educational need may well take precedence over those who have it as additional needs (non-educational).

Our Christmas party was well attended and, from the feedback we have received, was enjoyed by all concerned. We altered the buffet this year to a more child-orientated snack-based meal and again, that seemed to be appreciated.

We would like to have done more on the social and educational side but we just don't have enough helpers to get things moving. We had planned a training day with the LEA (similar to the one held in Shropshire) but again, not enough people to help organise it in the time available. We do hope that we can get this training day off the ground and are looking at October as a possible month. We will keep you informed of developments.

Our first AGM will be held at the same venue as our Christmas party (St Anthony of Padua church hall on Saturday, 12th June 2004 from 2.00 p.m. to 5.00 p.m. and will include entertainment for the children and a light buffet and I hope as many of you as possible will be able to come. The actual AGM will be held from 2.30 p.m. to 3.00 p.m. so there will be plenty of time for a chat amongst yourselves afterwards.

All voting members will already have received a letter from me asking them to consider becoming Trustees of DSL.
I now throw down a different challenge to all our members, voting or not.

During the time we were a branch of the DSA and during the last year as DSL, anything that we have tried to do has had to be done by the committee members (now trustees) themselves. At present, the trustees comprise only five families, (many in full-time employment). This makes it very difficult for us to find time to arrange events, attend forums, and visit new parents etc. and quite a few of us have served for in excess of ten years. Even with a full compliment of trustees, we can only number ten, which isn't many.

We would really like our members to give us new ideas and to tell us what they want us to do (within the rules of our charity). Our posts as trustees are really to ensure that any spending is done correctly and for the right reasons as stated in our constitution.

In an ideal world, our members would approach us with an idea, we would discuss it and, if approved, would make the funding available - but it would need someone to carry out the idea. If those who put forward the idea were willing to organize it, there need be little interference from the trustees other than to check that the charity rules are being kept. If you would like to arrange small local coffee mornings, we could fund the expenses etc. Even much larger projects could be run by you, the members without the need for the trustees to be looking over your shoulders every few minutes.

You do not need to be a trustee to become involved. What we need are people we could call upon to either organise things themselves or to help us out on projects that have been suggested. We could do an awful lot more in Liverpool if we had more people involved.

I would ask you all, especially those with younger children, to seriously consider becoming involved with the planning of the things that you want doing. We, the trustees, will consider any suggestions (within reason of course) that fall within our aims under our constitution.

If you have been sitting and thinking, “Why don’t they...?” “I wish they would do…” then have a word with us. Perhaps YOU can do it!

From time to time, we receive requests from students and others, seeking help with various projects. It is always made clear that we cannot divulge the names and addresses of our members. We do, however, agree to pass on information to our members who may then decide whether or not to participate.

We have recently received the following requests and would ask you to take the time to read them and, if you feel able to help, contact the person concerned directly.

Research into the experiences of family members of people with Down syndrome and probable Alzheimer’s disease.

I am a Trainee Clinical Psychologist at the University of Liverpool. For my thesis, I am hoping to explore the experiences of loss by family members of people with Down syndrome that receive an additional diagnosis of probable Alzheimer’s disease. I am requesting your help in recruiting potential participants from readers like you.

In particular, I wish to examine the feelings people had when they were told about each of the diagnoses. It is hoped that their experiences will assist in improving the diagnostic and supportive role of clinical psychology services working with people with both Down syndrome and Alzheimer’s disease and their families.

The life expectancy for children born with Down syndrome in England in 1949 was only 12 years (Penrose, 1949). In 1988, Mann reported that 70% of people with Down syndrome live beyond their 50th birthday. Only recently therefore, has there been a shift from studying children and adolescents with Down syndrome. Due to dramatic improvements in life expectancy, there has been an increased focus on investigating Down syndrome in adults and older adults. Of particular interest has been the relationship between Down syndrome and a diagnosis of probable Alzheimer’s disease.

Research focused on similarities between the neuropathological changes in the brains of older people with Down syndrome and the senile plaques, neurofibrillary tangles and granulovascular degeneration characteristic of Alzheimer’s disease. By the 1960’s it was generally agreed that people with Down syndrome over the age of 35 have the neuropathological features of Alzheimer’s disease (Heston, 1977). However, only a proportion of people seem to develop definite signs of deterioration. . Lai and Williams (1989) in probably the most important study, found the prevalence of a decline attributed to dementia to be 8% in those aged 35 – 49, 55 % in those aged 50 – 59, and 75% in those aged over 60 years.

Families of children who have Down syndrome will have coped with the demands of caring for a long time. They may have experienced financial constraints, limited resources and may now be coping themselves with older age. The additional diagnosis of Alzheimer’s disease may be experienced as an unexpected and unfair cruel blow for themselves and their family member. It may lead to feelings that are part of grief such as anger, depression or guilt. They may experience feelings of loss of the person they knew as well as grief during the inevitable death and dying. They may be used to advocating for their family member’s needs, negotiating with service providers and wish to project an image of being able to continue to cope. Yet the increased physical and mental demands may be overwhelming. They may be relieved to hear that they will now outlive them, knowing that they no longer have to worry who will care for them after they have gone. It is these and other undiscovered experiences that the researcher wishes to explore.
The proposed study will include family members of people with Down syndrome who have received an additional diagnosis of probable Alzheimer’s disease. Family members whose son or daughter has died as a result of Alzheimer’s disease are also to be included. This will also allow an exploration of their experiences that may be different from other mothers still coping with caring for their son or daughter. I will not interview participants within 12 months of their family member receiving the additional diagnosis of probable Alzheimer’s disease or 12 months following the death of their family member.

I would like to invite any potential participants to contact me should they wish to be included in the study. I am aiming to interview the participants twice each interview lasting about an hour. On receipt of a telephone call or following the receipt of a letter from a potential participant, I will then contact them and meet with them to explain the study in depth and obtain written consent prior to interview.

If you have any questions or comments please do contact me. Thank you for your time in considering this request.

James Millington ,
Trainee Clinical Psychologist,
Doctorate in Clinical Psychology Course,
Department of Clinical Psychology,
University of Liverpool,
Ground Floor,
The Whelan Building Quadrangle,
Brownlow Hill,
Liverpool L69 3GB

References:
Heston, L.L. (1977) Alzheimer’s disease, trisomy 21, and myeloproliferative disorders: Associations suggesting a genetic diathesis. Science, 196, 322 – 323.

Lai, F. and Williams, R.S. (1989) A prospective study of Alzheimer’s disease in Down syndrome. Archives of Neurology, 46, 849 – 853.

Mann, D.M.A. (1988) Alzheimer’s disease and Down’s syndrome. Histopathology, 13, 125 – 137.

Penrose, L.S. (1949) The incidence of mongolism in the general population. Journal of Mental Science, 95, 685 – 688.

Please allow me to introduce myself. My name is David Corcoran and I am a
member of the academic staff within the School of Psychology at the University of East London. I have a B.Sc. in Psychology and an M.Sc. In Clinical Neuroscience. My specific area of interest is within autism and I have over ten years experience working in a number of settings with children/adults with autism and other learning disabilities. I am currently undertaking a PhD in which I will be researching the imitative abilities of children with autism and Down syndrome.

For the research to be viable, it will need children with autism as participants, children with Down syndrome, and typically developing children to compare them against. I am finding it difficult to recruit children with Down syndrome to the study. If you are a parent of a child with Down syndrome, or can put me in contact with such parents, I would really appreciate your help.

Proposed Research Aims:
The aim of the study is to look at the ability of children with autism to imitate others. I hope to demonstrate that this ability is impaired in this group compared with children with Down syndrome and typically developing children, which are matched for age and intelligence. The ability to imitate is a fundamental aspect of child development and what I hope to show is that impaired imitation is at the root of the social disabilities in childhood autism.

The research procedure will involve the children completing a number of cognitive and imitation tasks that are fun and which most children enjoy. All research procedures will follow the British Psychological Society ethics guidelines. This research will be undertaken under the supervision of two Chartered Psychologists. Also, complete confidentiality will be given to those who take part in the study. This study has received the full support of the National Autistic Society and has received their ethics approval. I have enhanced clearance from the Criminal Records Bureau (Police check that schools use).

Supervisors:
Elizabeth Attree, Principal Lecturer;
Professor David Rose, Head of School of Psychology,
School of Psychology
University of East London,
Stratford
London
E15 4LZ
Tel:- 0208 223 4461 0208 223 4500

The research is important, as it will have clinical and educational implications. If you would like more information, you can contact me on: 07957 164 952

If you feel that you can help in any way I would very much like to hear from you.
Kind regards
David Corcoran

The BBC is currently researching a documentary about Down syndrome. It is an observational documentary, which will be full of positive images and will help to break down some of the prejudices and misconceptions that often surround children with disabilities.

We are particularly interested in hearing about the experiences of people in their thirties, forties or fifties who have Down syndrome, with a view to looking at the various paths they have taken in their lives.

We would also like to speak to mothers-to-be who have recently had a
nuchal translucency scan or an amniocentesis, and have discovered that they are carrying a baby with Down syndrome or who have been told that there is a very high risk that this is the case.

If you are interested in talking to us in confidence about your experiences, please email Amanda Faber at:-

I am writing to you on behalf of the Carers Week partnership, consisting
of the four national charities - Carers UK; Crossroads; Multiple Sclerosis Society; The Princess Royal Trust for Carers.

Carers Week this year takes place from June 14–20 and our theme is Carers and Health. We aim to support the six million people in the UK who care for a relative, friend or partner, or for a child with a disability.

Carers consistently tell us that they need more support, and often refer
specifically to GPs and other community health professionals, who are ideally placed to provide support in various different ways.

The purpose of this survey is to update our knowledge, in advance of Carers Week, about the support that carers currently receive from GPs, and to find out how carers view that support. We are also carrying out a survey of GPs, so it will be very interesting to compare the results.

We realise that there are many demands on your time, and have designed this form so that it should only take you a few minutes to complete. (NB you will find a copy of the form included with the newsletter) The form can be photocopied, or additional copies can be obtained from;-
Rebecca Lewis on 020 7566 7608 or rebecca@ukcarers.org.

All information provided will be kept confidential. This form needs to be returned by 10 May 2004. My thanks in advance for your assistance.
Yours faithfully

Some time ago, we told you about our daughter Shauna’s achievement in dance. Well Shauna is eleven now, she is now in Grade 4 ballet, has recently passed her disco stage 2 with honours and her Grade 3 Irish with Merit. Quite an achievement by anyone’s standards, but not content with all of this Shauna has been selected by her Irish Dance School to perform in a dance/drama at the World Championships in Belfast this Easter!
Shauna Hogan seen here on the right .

To say we are immensely proud is an understatement; Shauna loves her dance classes and works very hard. George, her Irish Dance teacher recently presented her with flowers after a performance saying she was an inspiration to all the dancers as she always gives 110%.

If anyone is interested in classes, we would be more than happy to pass on information.
We feel that dance has opened up so many opportunities for Shauna. It has helped her concentration and co-ordination as well as opening up a social life, which has encompassed the whole family.

Mum still dances and Shauna is quick to point out her mistakes and the fact that no one has asked her to dance at the World Championships.

Just a reminder about our football coaching sessions which take place on a Saturday morning from 10.00 a.m. to 11.00 a.m. at The Greenbank Project Gymnasium, Greenbank Lane, L18.

We have a group of children who attend regularly and really enjoy themselves but there is plenty of room for more. Girls, as well as boys, are welcome and there are no strict rules about age, we leave that to your discretion; after all, you know your child best.

Why not give it a try? Come along any Saturday to check it out or give our coach, Alan Atkinson, a call on:-
0151 724 6181

Every year, the children in Year 6 at our son’s school go to Colomendy, which, for those of you who don’t know, is a residential centre near Mold, North Wales, run by Liverpool Education Authority.

We were keen for Joe to participate in the trip but were concerned about how he would cope with being away from home for several days. We are now asking ourselves what we were worrying about!

Thanks to the wonderful staff from St Austin’s school, Joe had a brilliant time and didn’t once ask to come home! We are especially grateful to Mrs. Martin his class teacher, Mrs Boyce the SENCo and Mrs Chan Joe‘s ESA, who gave up her own time to go along and support him.

Joe is growing up fast and will be moving on to secondary school in September, another big step for him and us. It was inspiring to read in the last issue of our newsletter, about Sophie Hughes and Chris Hill who started at secondary school last September, it certainly helps to hear how other children with Down syndrome have coped. We are also delighted that Mrs Chan has agreed to stay with Joe when he moves on and would like to say a big ‘Thank You’ to her.

We are deeply indebted to everyone at St Austin’s School who has played a part in Joe’s education so far. He has been fully included in every aspect of school life and has thoroughly enjoyed himself. The only thing he hasn’t been too keen about is homework, which Mrs Chan has had to retrieve from the class bin on several occasions!

We hope you enjoy reading the following accounts of the Colomendy trip written by Joe, Mrs Martin and Mrs Chan.

Joe
Colomendy is busy and great. We played lots of games. I sleep with my friends, Shaun and Richard.
Canoeing
I did canoeing and skiing and the Postman’s Walk along a rope over the river. I threw stones in the river. Me and my friends did a show; I told jokes and did magic tricks.
I served mass with Amber on Palm Sunday. Father Gerald came to Colomendy.

I packed my bag when it was time to come home. Canoeing

Mrs Martin
The annual visit by the Year 6 children of St. Austin's Primary School to Colomendy in North Wales is always eagerly awaited. A meeting with parents is the first indication that the visit is imminent. This meeting is to inform parents of the cost and itinerary and to reiterate the importance of sending children with old clothing. Part of the Colomendy experience for the children is to get dirty during the activities.

Once the parents meeting has taken place the children start to have their own meetings. This gives them the opportunity to ask questions and allay any fears about going away from home, perhaps for the first time, on their own. The questions come thick and fast and the same ones are often repeated at every session.

Joe Baxter listened intently to everything that was said. He asked questions about the food, the beds, the weather, just like all the other children. After a while though, Joe had heard all the questions he wanted to hear and started to supply the answers to other children's enquiries. His hand would go up and in response to, "Yes Joe," he would tell the assembled company that when you climb a mountain you need your hat and gloves because it will be cold at the top. It is fair to say that, at this point, Joe could not wait any longer to be on his way.

Once there, Joe participated with gusto in every activity that was undertaken. There is a lot of walking and, while other children were reluctant to put on their boots for yet another trek, Joe would be ready and saying, "Come on kids!" His skiing was, to say the least, impressive and intrepid. Franz Klammer take heed. He spent an hour canoeing. He followed all instructions to the letter and the look of delight on his face when his team won a race said everything. Joe was having the time of his life.
Joe with Mrs Martin

The problem-solving activity proved to be a problem for more than Joe. A group of ten children are given different problems to solve in any way they can. They have certain rules and restrictions but otherwise the way they solve the problem is entirely up to them. There is a lot of shouting from those children who think they know better than anybody else. There is a lot of silence when plan 'A' goes wrong and plan 'B' is embarked upon. Throughout it all, Joe did as he was told by others, told others what he thought they should do and worked as a team member to complete the task, which eventually they did.

The evenings are given over to outdoor games of football, rounders and skipping and to indoor games of basketball, pool and table tennis. Joe had enough energy to engage in one or other and, at lights out, was asleep before his head hit the pillow. The final event is a swim at the Plas Madog Leisure Centre. Joe was one of the first to 'ride the slide' even though the queue took about five minutes to reach the top. Joe with Mrs Martin

The four days pass very quickly, even for the teachers. The children gain a tremendous amount from being away from home, sharing tasks and activities and mixing with children that they have been in school with for seven years but who they might not normally play with.

Joe had a tremendous time and so did the other sixty-three children who helped each other make Colomendy 2004 a memorable occasion for all concerned.

Mrs Chan
On Friday 2nd April, 64 excited children left St Austin’s School heading for Colomendy in North Wales. As for myself, it had been over 30 years since my last visit so I was a little apprehensive as memories of hard beds, awful food and homesickness came flooding back.

After an hours journey we arrived at the camp - nothing had changed!!!! There was no time to unpack as it was straight out to the Devil’s Gorge and this walk set the pace for the rest of the stay - FAST!

Over the next few days, I was amazed at the skills and talents of the children. Joe was an absolute natural on the ski slopes, twisting, turning and dipping, he loved every moment of it.
Ready for action!

On the Postman’s Walk, I was asked to ‘have a go’ by the warden, however, gentleman Joe came to the rescue and said, “Don’t worry Mrs Chan, I’ll do it,” he did and he didn’t fall in the river.

Joe and all the children did loads more activities, canoeing, problem solving, basketball, football and even conquering a mountain. Probably the highlight of the stay was the talent show; there was lots of competition from some very talented children. Groups of girls enjoyed doing the Cha Cha Slide, some did solo parts, sketches and dances. We also had a magician from Las Vegas called Joe Baxter who stole the show.

It was soon time to go home and, I can honestly say, every child slept well, ate really well and there was very little homesickness, so perhaps Colomendy has changed after all.

The Residents of Churchfield Court Sheltered Accommodation	£36.00
Jean Parsons on behalf of Cargo Handling Staff at Liverpool John Lennon Airport	£120.00