I imagine some of you, like me, are considering going on a diet in an effort to get into the clothes that haven't fitted us since November, or even earlier in my case.

I hope everyone had an enjoyable and peaceful Christmas and you have been able to find space in the kids' bedrooms to accommodate all the extra toys and presents.

The DSL Christmas party went extremely well and it was nice to see some new faces this year as well as some old friends. I think the children were all entranced by Barnaby and his magic. The disco was brilliant and it is always a delight to see the look on children's faces when Father Christmas walks into the hall. I would like to give special thanks to Mal Hill for organising the catering again, and Margaret Hogan for buying and wrapping all the selection boxes (it took her about a week to wrap them all), they did us proud. Our next Christmas party has already been booked and I hope it goes as smoothly as this one.
Glen Fletcher has taken over as editor of the newsletter so you may see some changes to it. If you have anything which you would like to be included, please send it to Glen via our P.O. Box.

Finally, I would like to wish everyone a very happy new year, which brings all that we hope for. Please spare a thought for those less fortunate than ourselves, particularly those affected by illness, war or natural disasters.
 

Tony Baxter Chairperson

As you may be aware, since our last AGM we have encountered a number of problems with our Constitution. These problems were identified following a dispute which arose regarding membership, voting rights and eligibility to serve as a trustee of the charity.
The Charity Commission became involved and four trustees attended a meeting with them in August 2004. The Charity Commission pointed out that there were several flaws in our existing Constitution which needed to be addressed, namely:

1. The `objects' clause was too restrictive and did not empower us to do many of the things we hoped to, for the
benefit of our members.

2. Our membership rules, which had been published in several newsletters and also sent out to prospective members, were at variance with the constitution, particularly with regard to voting rights and eligibility to serve as a trustee of the charity.

3. The `Area of benefit' was not defined. This details the area (Geographical) in which we operate and provide
support. .

We were told that if we wanted the charity to operate as we had originally intended when it was first set up, and if we wanted to ensure that only those with a direct responsibility for people with Dawn syndrome could serve as trustees and make decisions about how the charity was run, the Constitution required amendment.

The Constitution could only be amended at a General Meeting of the members.

The trustees had several meetings to discuss these issues and decide what amendments were required. The required period of notice of the General Meeting was given and the meeting was called for the evening of 8th February 2005, at which the proposed amendments would be discussed and voted upon by those members present.

The General Meeting went ahead as planned and all the proposed amendments were voted on and carried unanimously.

I would like to thank those members who attended the meeting and offered their full support to the trustees.

The wording in the original Constitution, which was given to us by the Down's Syndrome Association, presented us with problems in certain areas.

The original wording regarding membership meant that anyone, whether they were Full or Associate members, had voting rights at meetings and were eligible to serve as trustees.
The amendments to the Constitution mean that only those with a direct responsibility for people with Down syndrome, or people who have Down syndrome can vote at meetings and hold office.
Full membership has been expanded to include the families of people with Down syndrome.
The new wording of the membership clause is as follows: -

Membership of the Organisation is open to the following:
a) Full Membership is available to individuals with Down syndrome and the families of individuals with Down syndrome that the Trustees decide to admit to Full Membership.

b) For the purposes of this clause, families shall consist of parents, siblings, grandparents, spouses, partners, dependants and individuals having had the care and control of a person with Down syndrome; and the family's membership shall confer two rights to vote and take elected office when exercised by two adults in the family.

c) Associate membership is available to any individual or organisation that the Trustees decide to admit to Associate membership and who/which supports the Objects. Associate membership confers no right to vote or take elected off ice.

The original wording of the Objects clause was very restrictive. The new wording which allows us to be more flexible in what we can do is as follows: -
OBJECTS
The relief of the needs of people with Down syndrome by the provision for such people of facilities, services and opportunities that will increase their participation in society and any other charitable purposes connected with Down syndrome within the area of benefit.
(The following paragraph has been added to the 'Ob,jects' clause and gives more scope to what we are able and allowed to do).

To offer support for people with Down syndrome and their, families, helpers and carers within the area of benefit.
The Charity Commission pointed out that the 'area of benefit' in our original Constitution was not defined.
The 'area of benefit' is now clearly defined in the new constitution as follows: -
The `area of benefit' means the City of Liverpool (that area controlled by Liverpool City Council) and the Surrounding Area as decided by the Trustees.
 

The words Surrounding Area have been included because there may be people who live in areas not covered by Liverpool City Council but still have an "L" postcode, eg. Halewood, Huyton etc. and we are the closest charity to them. This enables us to make first contact visits to new parents in those areas, if they so request, and offer the necessary support.
Because the amendments were voted on and agreed by all those present at the General Meeting, it means we are now operating under the amended Constitution.
I hope this clarifies the situation and explains why changes to the Constitution had to be made.
Down Syndrome Liverpool can now move forward and operate as we originally intended.

Tony Baxter Chairperson
Down Syndrome Liverpool

Shauna's dance school came 9th so I suppose that makes them 9th best in the world.

Following on from that Shauna danced in the DADA Fest (Deaf & Disabled Artists) in November and won the over 21's runner-up performing arts award.  She was delighted with her trophy and even more delighted with the £50 that came with it.
A big thank you to George Ferguson Shauna s irish dance teacher who encourages her so much and has given her so many

opportunities to do the thing she loves best. Shauna can be seen performing at the DADA fest on the North West Disability Arts Forum website.

Margaret Hogan

Some weeks later, Joe's diarrhoea and vomiting began again - it's no fun having to change sick covered bedding and pyjama trousers at 2.a.m. is it? Again, I tried the usual treatment but the diarrhoea persisted for almost 2 weeks. This time I took Joe to our GP who sent a stool sample off for analysis to make sure it wasn't anything more sinister such as salmonella poisoning. By this time I was paranoid about making sure I washed my hands thoroughly before cooking and I cleaned the toilet with loads of bleach! The doctor confirmed that the best course of treatment was what I was already doing i.e. ensure he had enough fluids, water, weak squash or flat lemonade and dry biscuits. The results of the stool analysis came back negative and Joe's symptoms eventually subsided.

By the time Joe was coming towards the end of Year 6 last summer, he had experienced four or five bouts of diarrhoea and vomiting. At that time, I happened to be speaking to a very good friend of mine whose husband was diagnosed with coeliac disease almost 30 years ago. I mentioned that Joe again had diarrhoea and I had also noticed that his 'wind' was quite smelly - sorry if that is too much information for some of you but it is important! My friend commented that these were symptoms of coeliac disease but I have to say, I didn't really want to think this was what was wrong with Joe. Nevertheless, with prompting from one or two people who kept telling us that we really ought to get to the bottom of this (no pun intended!!) and being fed up with washing underpants and pyjama trousers, I took Joe back to the doctor. This time we saw a young trainee GP; I didn't specifically mention coeliac disease to her but did suggest that Joe might have some sort of allergy. She mentioned coeliac disease and asked if I knew what it was; she then said she would refer Joe to Alder Hey to see a Gastroenterologist.
We went to Alder Hey last August and, I have to confess, I did wonder if we were wasting everyone's time. The doctor asked a lot of questions and asked what we knew about coeliac disease. We said we knew quite a lot because a very good friend had the condition. The doctor went on to explain that there could be many causes of diarrhoea and vomiting in children and, occasionally, they just had to conclude that no cause could be found. Significantly, when Joe was weighed and his weight marked on the chart which has been in his file since he was a baby, he was well below the 10th centile. From birth to the age of 6 when his weight was last recorded on this chart, he was always around the 50th centile i.e. of average weight for a child with Down syndrome.
 

The doctor referred Joe for blood tests and also to the dietician to discuss diet because certain foods, such as too much sugar in drinks, can cause fermentation in the intestine leading to diarrhoea. The dietician was quite happy with Joe's diet but suggested that we reduce his intake of Ribena which we did, in fact, we cut it out completely. However, when the blood test results came back, they indicated that Joe possibly had coeliac disease. The test is not 100% accurate in confirming a diagnosis; it can certainly rule a person out but only gives an indication of coeliac disease. The next step in confirming diagnosis is an upper endoscopy and biopsy, which involves passing a narrow tube, with camera attached, down the throat, through the stomach, and into the small intestine where a biopsy is taken; this was done under general anaesthetic. The results were back within 3 days and confirmed that Joe does have coeliac disease.
We have since learned that the medical profession is now aware of a higher incidence of coeliac disease amongst people with Down syndrome than in the general population. This came as quite a surprise to us because we have come across nothing in the literature about Down syndrome that mentions a link, hence the reason for me writing this article to make other parents aware. For those who don't know, coeliac disease is a life long condition that affects the digestive system in some people susceptible to gluten. Gluten is a protein found in wheat, barley, rye and oats and in certain people causes damage to the lining of the gut to such an extent that it becomes inflamed.. This reduces the absorption of food as well as causing a variety of symptoms. If not treated, long term illness resembling malnutrition can result. The treatment for coeliac disease is a strict gluten free diet for life. 1 in 1000 are medically diagnosed with coeliac disease but research suggests that as many as I in 100 people in the UK have undiagnosed coeliac_.:_ disease. An excellent source of information is the Coeliac Society~ UK web site at www.coeliac.co.u k

As for Joe, we have now started him on a gluten free diet and it is' a case of learning as we go along. The Coeliac Society provide a` food and drink directory which lists thousands of ordinary, branded and supermarket own brand, products which are gluten free. Gluten free bread, bread mixes, pasta, biscuits and flour are available on prescription from the chemist. The major supermarkets also offer these, as well as many other gluten free products, in their 'Free From' ranges so things aren't too bad. I think the biggest challenge will be helping Joe to understand why he has to say, "No," to certain foods but, hopefully, in time he will get to know what he can and can't eat. Support from other people he comes into contact with, family, friends and school in particular, will be important so that temptation is not put in his way.
If you see us at the Christmas party this year, studiously avoiding the food provided and eating our own `picnic', you will now know why!!

Pat Baxter - Joe's mum
 

Coeliac Society of the United Kingdom

For more information including their leaflet on dermatitis herpetiformis, contact the Coeliac Society of the United
Kingdom.
address:
PO Box 220,
High Wycombe,
Buckinghamshire,
HP11 2HY.

telephone: 01494 437278   helpline: 0870 444 8804 email: admin@coeliac.co.uk

Other useful addresses.
www.cafamily.org.uk     http://www.vegsoc.org/info/gluten.html  http://www.coeliac.info/   www.dsmig.org.uk
 
http://www.panix.com/~donwiss/gfmall/
 

Some information courtesy of Coeliac UK

Your specialist or GP will refer you to a dietician to help you make the necessary changes to your diet and work out a healthy balance of foods.
There are many gluten-free alternatives to 'normal' foods, such as gluten-free breads, pasta, pizza bases and biscuits. Most supermarkets now carry glutenfree ranges, and some foods are available on prescription.
You can get information about the choice of foods on prescription and samples of gluten-free foods direct from the manufacturers.
Check out Coeliac UK's Food and Drink Directory for manufacturer details and a complete list of prescribable foods.
Many foods are naturally gluten-free, including rice, maize, meat, fish, cheese, milk, eggs, fruits, vegetables and pulses.
Coeliac UK is devoted to providing information and support to people with the condition. Our Gluten-free Food and Drink Directory contains over 11,000 gluten-free foods and drinks, We also provide advice on reading labels to check for gluten content, how to manage when eating out, managing your healthcare needs - in fact on any aspect of the coeliac condition we can help.
Coeliac disease affects 1 in 100 people in Europe. It is a lifelong condition that may be diagnosed
in childhood, or not recognised until later in life. The problem is caused when a person's body is unable to cope with gluten - a protein found in wheat, rye and barley. In people with coeliac disease, gluten damages the lining of the gut. When the gut lining is damaged the body can't absorb all the necessary nutrients from food.
Bloating, diarrhoea, nausea, wind, tiredness, constipation, anaemia; mouth ulcers, headaches, weight loss, hair loss, skin problems, short stature, osteoporosis, depression, infertility, recurrent miscarriages, joint/bone pain,
Some symptoms may be confused with irritable bowel syndrome (IBS), or wheat intolerance, while others may be put down to stress, or getting older. As a consequence, it can take some time before an accurate diagnosis is sought, or made.

Step One: If you suffer from Arty of he symptoms Had, you could have coeliac disease. The first step for a diagnosis is to discuss your concerns and symptoms with your GP.
DO NOT at this stage, remove gluten from your diet. Continue to eat normally - including bread, pasta and cereals. If you have already excluded gluten from your diet, you must re-introduce it for at least six weeks before any diagnostic tests are performed.

Step Two: Your GP can take a simple blood test to check for endomysial antibodies (EMIA) and/or tissue transglutaminase antibodies  (tT-GA). It-is possible to have a negative blood test yet have coeliac disease,

Step Three.- Your GP will then refer you to a hospital specialist a gastroenterologist for a biopsy of the gut. This involves a flexible viewing tube, known as an endoscope, being passed via your mouth down into the small intestine (this can be done using local anaesthetic on the throat andsedation).
ion). A small tissue sample is collected, then examined under a microscope to check for abnormalities,

If you are diagnosed with coeliac disease you will be given information and support for following a gluten-free dot Once gluten is removed you will probably start to feel much better than you have done for some time, You will need to follow a gluten-free diet life. This means cutting out Wheat, Rye,barley and foods containing thes cereals from your diet.
(above Copyright Ceoliac UK)

Liverpool Children's Information Service (LCIS) provides parents, carers, workers and employers with information on childcare facilities in Liverpool. The service can provide accurate, up-to-date information about childcare in the city as well as give advice about appropriate childcare services.
All of the information is stored on a database, making it quick and easy to find the information you need and where this is not possible, LCIS will either direct you to where you can find it or will find it out for you and add that information to the database for future use.
By working with in this way LCIS can improve the service, fulfil) your information needs and raise the profile of childcare and related issues in the city.
LCIS can provide information on;

After school clubs
Becoming a Registered Childcare Provider Breakfast/Before School Clubs Childminders
Children's Centres
Creches
Day Nurseries
Early Years Education
Extended Schools
Free Education Places
Holiday Play Schemes
Parent and Toddler Groups Pre-school, Facilities
Play Schemes
Support for Disabled Children and Children with special Educational Needs
Working and Careers in Early Years and Childcare Work Life Balance.

The information LCIS holds is updated regularly and added to when the service is made aware of new services or when enquiries result in new information. ;`

What can you expect?

accurate, up-to-date information appropriate signposting to other services a customer-friendly service
confidentiality
an opportunity to have your views heard ,
a service that addresses individual needs { regardless of your background and circumstances
a written response to your enquiry to be sent within ~ 24 hours
confidentiality
The service operates within the guidelines of the council's I Code of Conduct. This safeguards callers' privacy, except where there is evidence of a child at risk. The Data Protection Act 1998 ensures that callers and childcare provider details are not disclosed for purposes other than, childcare information.

 telephone 0800 085 2022
Liverpool Children's Information Service will work with individuals, local communities, interpreters and translators to promote this service and will arrange for the most appropriate method of informing people by using ~ a variety of methods (translations, large print, audio tape, ~ interpreters, local press, etc.)

For more information, contact LCIS on 0800 085 20 22, email Icis@Iiverpool.gov.uk log on to www.liverpool.gov.uk ~ or call into your local Sure Start or Children's Centre.

if you have a child aged 0 - 19 years and
    • you have been told that they need extra help at school
    • or you believe they have special educational needs
    • or if they are having difficulties at school

You can contact the Parent Partnership Service for information & support
    • we provide full, accurate information on parent's rights,roles and responsibilities within the SEN process
Does your child need extra help to learn?
    • we can help you to understand the SEN assessment process, help with letters and forms and help you work in partnership with your child's school/nursery and the other professionals your child sees

we give you information about the wide range of options available so that you can make an informed decision as to what you want
    • we have links with parents' groups and voluntary organisations as well as other services, so we can point you towards other sources of help and support,
Parent Partnership Service
The Fairfield Centre Sheil Road
Liverpool
L6 3AA

Tel. 0151 233 2848
or email : parentpartnership@liverpool.gov.uk

NEYS is a community-based Service and has teams for the north, central and south areas of Liverpool. We offer advice, assessment and practical support for children aged 0-5 years with special educational needs and/or disabilities, and their families.

What services does NEYS offer?

Advice/consultation by telephone, drop-in or appointment
Assessment of needs at nursery, school or home
Joint community clinics, where you can see several professionals at the same time, cutting down on appointments Intervention and support
Support at home for child and family Support for childminders, playgroups, nurseries and schools
Training for families and professionals
Who can request a service?

Any parent/carer. Your child does not need to have a diagnosis in order to access the service. Professionals can also request services through NEYS but must ask for your permission to do this.

Who is in the NEYS Team?

Each team has:
Paediatricians (Children's doctors) Speech and language therapists Early Years advisory teachers Educational Psychologists Portage workers
Outreach support workers Family support workers Health Visitors
We also work closely with:
Occupational therapists Physiotherapists
Sensory service teachers
Disabled children's social work team
Area special educational needs co-ordinators
Will I have a single person to keep contact with?

Yes. If your child needs support for only a short time, one of the professionals will take the lead in organising this. If you and your child require help for a longer period then you will be offered a key worker for your family.

Can my child's nursery or school get help?

Yes. They can ask, with your permission, for the service to help them to meet your child's needs.

What if my child is not at school or nursery?

Your child can still receive services at home or at a Children's Centre or clinic convenient to you.

How long will support continue?

This will vary according to need, but support should be for a set time in most cases. NEYS will advise, support and train other professionals who will be involved in your child's education and care to enable them to meet your child's needs. NEYS works with children and families up to the end of the reception year in school.

What happens when NEYS support finishes?

Advice is provided for families and the staff who will continue to work with your child. If necessary, NEYS will refer your child to other agencies for support, with your consent and following discussion with you.

How does the service work?

1. Ask for a service request form
2. Fill in the form (you can ask us for help with this if you wish)
3. Send the form in to NEYS (address below) 4. Service request is discussed by team at the next possible intake meeting (held weekly during term time)
5. Initial visit arranged with you
6. Support plan drawn up
7. Parents and professionals contacted
8. Support begins
9. Regular review
 

How can I make contact with the NEYS team for my area?
Write, telephone, fax or e-mail to:
Neighbourhood Early Years Service
Lynne. Befl@liverpool.gov.uk
(Admin officer)
Kensington Infant School Brae Street
Liverpool
L7 2QG
TEL 0151 233 1112 FAX 0151 233 1116

Our football coaching sessions on Saturday mornings are still continuing. Why not bring your child along to join in the fun? None of our children are put under any pressure at these sessions and they all have a good time. It is also an opportunity for parents to have a chat.

We have a regular group of children who turn up every week  and really enjoy themselves, but we have plenty of room for more. It would be nice to see some more children become involved. Brothers and sisters are more than welcome to participate.

The coaching takes place on Saturday mornings at The Greenbank Project Gymnasium, from 10am to 11am and costs £1.50 per child towards the hire of the gym.

We are grateful to Alan Atkinson who arranges the sessions and coaches the children, as he has done for the last two years.

If you think your child would be interested in joining in on a Saturday morning, give Alan a ring on 0151 724 6181 and he can give you more information and directions if required.

jennie  Fletcher gaudie "big school"
 

Having cheered big sis Steph on, as she furthered her educational journey up to Broadgreen High, it was time for Jen to venture out in to the world of education too by joining mainstream school at Broadgreen Primary. Yes, mixed emotions were plentiful and that was only Mum and Dad!

After quite a fraught summer awaiting Jen's amended statement to come through and final confirmation that Jen would be starting school with her peers on the first
day back, at the 11th. hour we finally got the news that Jen had one of her two ESA's in place and she would be able to start school with the rest of the class in reception.

Jen was excited to be going to "big" school although she had loved her time at the Mystery Children's Centre, and would miss her friends and the staff, we convinced her that she would be making lots of nice  friends and that she would have lovely teachers and support staff. Jen couldn't wait to go through the classroom doors and

became absorbed in play straight away, oblivious to ' Mum's blubbering. Even though this was my 3rd. "first day" spanning over several years, I shed a few more tears this time and we hovered within in 1/2 a mile of the school f or the afternoon. I'm sure you'll all relate to that one.

Jen had a lovely day and Susan, her ESA said she'd been fine and had fun. Jen talked a lot that night and remembered names of the teacher and friends, it was lovely to hear her discussing her first day at school.

Well done Jen (((xxxx)))

We contacted you some time ago as we where keen to involve one of our players at competitive level with his own peer group. Although you did not have any contacts in this ; area you did invite us to submit an article on our player, ' who has proved to be an inspiration and an education to all the coaches and the players working within our club.

We are a professional badminton-coaching club, with national and county coaches. We coach from beginner level' to national level.

Martin joined Victoria Badminton Club (an ESP foundation) 2 years ago at the age of 10 with his elder sister
Martin's skills were initially quite minimal, naturally with a sport he had never encountered. Contact with the shuttle was limited and all movements were slow and uncoordinated, not unusual for all beginners.

However, he can now rally continuously using a variety of quality shots. His timing is such that he achieves power and accuracy and his overall ability is well above the mean of players his own age. Martin's footwork skills have also changed, he is now much more balanced, coordinated,'light footed' and can run with increasing speed during races. He is also comfortable running backwards and executing side-on chassis which are quite difficult skills to master.
Although we did pursue the avenue of competitive badminton for Martin with his peer group we were not successful, however we have not given up.

Both Dennis and myself are Tutor Assessors for the Badminton Association of England and train coaches. I am currently tutoring courses for assistant coaches who will then be selected to become coaches after a period of being mentored with experienced coaches. The course demands that you can perform basic badminton shots, rally and feed your players.

If any proactive parents, siblings (over the age of 16) or helpers are willing to be involved in becoming coach assistants and coaches working with your children under guidance from us, we will do all that we can to advise and move this project forward.

For any further information please contact me on the following numbers:
0151 427 5702 or 07747617808 or email me on EESP@fsmail.net
contributor: Shirley Wright

ddwespelitesports@wanadoo.co.uk
0151427 5702
or
07747617808
or email me on
EESP@fsmaiI.net

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All views expressed in this newsletter are the personal views of the contributors and do not necessarily reflect the views of  Down Syndrome Liverpool