Down's Syndrome Awareness Week

This week (4th-10th June) is Down's Syndrome Awareness Week. A campaign week that aims to raise awareness of the condition, dispel myths and allay the fears surrounding Down Syndrome. It is a national initiative organised by the Down's Syndrome Association. This year the main focus of the week this year will be improving employment prospects for adults with Down’s syndrome.

So bearing in mind it's Down Syndrome Awareness Week I thought I'd help raise awareness of Down Syndrome by a post about it!

Down syndrome is a genetic condition which is caused by the presence of an extra chromosome. The name ‘Down’ comes from the English doctor, John Langdon Down, who first described the syndrome in 1866 and ‘syndrome’ comes from the description of a collection of signs or characteristics.

Everyday in the UK, an average of one or two babies are born with Down syndrome, which means that one baby in 1000 has the condition. People with Down syndrome have a certain degree of learning disability however the degree of disability varies from person to person and it is impossible to tell at birth what that degree will be, most children with Down syndrome do learn to walk, talk, read and write just that their development is usually delayed.

There are certain physical characteristics that are shared by people with Down syndrome though not every child with the condition has every characteristic. Common characteristics are:

• Low muscle tone (although this improves with age)
• Lower than average birth weight and a slower pace of weight gain
• Eyes that slant upward and outward, the eyelids often have an extra fold of skin (epicanthic fold) which appears to exaggerate the slant
• A flatter than average back of the head
• A single crease which runs right across the palm of the hand

About forty per cent of children with Down syndrome have an associated heart defect. These heart conditions vary from small holes in the heart to more complex problems which may require major open heart surgery. The majority of these defects can be corrected and the prognosis is very good.

All babies are different from each other and the same is true of babies with Down syndrome, this means that in some babies the characteristic signs of Down syndrome are fairly easy to recognise soon after birth, however others need a blood test to check the chromosomes.

Lastly, I'd like to add a little picture of the daughter of a friend of mine, I'm sure you'll agree that she is gorgeous! Her mummy is a great advocate for Down Syndrome and wants the world know that having a baby with Down Syndrome is NOT the end of the world.

Please feel free to add your comments about your experiences of children with Down Syndrome (and send me any photos you want me to add).

For more information:

Down Syndrome Awareness Week 2009

Once again the time has come for Down's Syndrome Awareness Week (8th - 14th June) - I can't beleive a whole year has passed since we posted about last years when we featured a video made by the Stepping Stones Down Syndrome Support Group (still worth a peek if you've not seen it) and two years since we included Down's Syndrome Awareness Week 2007 on our blog featuring a lovely photo of a friend's little girl.
This year The Down's Syndrome Association's awareness week is entitled: Tell It Right, Start It Right.
This year the charity are campaigning for high quality information to be given to parents after they have received a prenatal or postnatal diagnosis of Down's syndrome. They want the Government to make it law that accurate and up to date information and support is available to parents when they are told their baby has Down's syndrome.
Research from the Down's Syndrome Association and the Foundation for People with Learning Disabilities has revealed huge disparities in the quality of information and support for parents when they are given a pre or postnatal diagnosis of Down's syndrome. Some have excellent and knowledgeable healthcare professionals. Others are given negative, confusing and unhelpful information. They think there should be legislation that ensures consistent and accurate information for people who are given a diagnosis of Down's syndrome or other prenatally and postnatally diagnosed conditions. This has recently become law in the US and you can read their legislation here. In the US it's now law that the following is provided: Up-to-date, evidence-based, written information concerning the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes as well as contact information regarding support services, including information hotlines specific to Down's syndrome or other prenatally or postnatally diagnosed conditions, resource centres, national and local peer support groups, and other education and support programmes.
Please take the oppotuinty to Sign the DSA's petition on the Government website to make it law that accurate and up to date information and support is available to parents when they are told their baby has Down's syndrome

Down Syndrome Fundraising

I've just been sent an email about two fantastic fundraising projects that will help you get ready for Christmas!

Firstly Downsed Christmas Cards - there are six designs to choose from including three of collages made by Downsed Pre-school Early Intervention groups - my favourite being this lovely Father Christmas card.

The Down Syndrome Educational Trust is a charity that is leading international research to examine how developmental and educational interventions can improve outcomes for people with Down syndrome. Their work improves the lives of many thousands of people living with Down syndrome around the world today.

Secondly, the PROUD Calendar 2008 - This calendar is produced by P.R.O.U.D and features photographs of the children from PROUD and other children who are gathered from various online communities from the UK and across the world, whose parents feel as proud about their children.

P.R.O.U.D. (Parents, Relatives & Others Understanding Down's) is a parent led support group (based in Walsall), which aims to provide for the needs of individuals with Down’s syndrome, to offer support, acceptance, advice and encouragement for parents, carers, family and friends of persons with Down’s syndrome, to increase awareness and knowledge of issues relating to Down’s syndrome and to educate the community about the presence, the potential and the needs of people with Down’s syndrome.

If you have any similar fundraising projects please let me know and I'll try and feature them here.

Down Syndrome Awareness Week

This week (2nd-8th June 2008) is Down's Syndrome Awareness Week, organised by the Down's Syndrome Association.

Awareness Week this year will focus on empowering families and carers of people with Down's syndrome by providing them with knowledge about their rights so that they may demand appropriate services and treatment. The Down's Syndrome Association are producing an easy-to-read guide about the Human Rights Act and how to use it. We will also be asking our members to find out whether their local authority is paying sufficient attention to the Disability Equality Duty and the Human Rights Act.

Every year Awareness Week gives all our wonderful members and supporters the opportunity to stand-up and shout-out about Down’s syndrome and the Association. It is the perfect chance to raise awareness of the work of the DSA and to champion the rights of people with Down’s syndrome.

This video clip was put together especially for this week by Stepping Stones Down Syndrome Support Group, I'm sure you will agree the children are all gorgeous.

Make an on-line slideshow at www.OneTrueMedia.com

To celebrate this week the code DSAW08 will save you 10% at Littlesheep Learning (offer ends 9th June).

Down's Syndrome - The Essential Guide

We have been sent a copy of Down's Syndrome - The Essential Guide by Antonia Chitty and Victoria Dawson to review. This is the third book in the series that they have written (the first being Special Educational Needs - A Parents Guide).

Down's Syndrome - The Essential Guide is for parents who have just received a diagnosis as well as parents who are already caring for a child with the condition and it covers all aspects of Down's syndrome from diagnosis to adulthood.

In my opinion this book is great, it has simple easy to read chapters so that you can dip in and out as things become relevant to you or read it in one sitting. There are facts, parents experiences and a very comprehensive list of support organisations - a fantastic resource for anyone with a child with Down's Syndrome or who is caring for one.

Published by Need2Know, Down's Syndrome - The Essentual Guide is available now from the Need2Know website (http://www.need2knowbooks.co.uk/) or by calling 01733 898103 or emailing sales@n2kbooks.com. Price: £8.99.

Down's Syndrome Awareness Week 2010

This week (15th-21st March) is Down's Syndrome Awareness Week - I have blogged about it in previous years, but thought this week was worth mentioning again to raise awareness especially as 2010 marks the 40th anniversary of the Down's Syndrome Association which provides help and support for people Down's Syndrome and their families. They have lots of information available here.

Also Antonia Chitty has got a new book on Down’s Syndrome coming out in June and the publishers are making a special pre-publication offer to tie in with Down’s Syndrome Awareness Week. Instead of £8.99 the book is available for £5 from 15th to 21st March. Buy it here if you want to be one of the first to use this practical guide. Please note: post and packing is included, so £5 is all you pay, but you will only get the book on publication – at the start of June.

The Changing Treatment of Children with Disabilities

I've always been interested in the history of health and social care in the UK and the developments of improved understanding, care and integration for people with disabilities.

I've just read this article about the changing attitudes surrounding care for children with Down Syndrome over four generations of families with a child with Down Syndrome. It's quite eye-opening to read how recently systematic institutionalisation still occured. The article reminded me of a school my aunt taught in who were among the first to welcome children with Down Syndrome into mainstream schools which is no-longer considered unusual. I think it's great how attitudes to inclusion are improving (although I'm sure there is still a long way to go).

Well done everyone who has helped to make a difference and change the care systems - I hope that things continue to improve for all children with disabilities.

Fantastic Down Syndrome Advert

A friend just sent me a link to a really positive advert for the Down's Syndrome Association. Take a look!

It reminds me that children are generally very accepting of children with differences. To them it often doesn't matter what their friend 'can't' do they always find something that they can.

Floopy - Threading Toy

A long time ago a friend who has a daughter with down syndrome mentioned a great threading toy - I think it was her Portage worker who showed it to her.

We've tracked it down and are now pleased to announce that we are stocking the 'Floopy' at Littlesheep Learning.

The 'Floopy' consists of a chunky, flexible, stripy pipe and six brightly coloured textured jumbo sized foam beads that can be threaded onto it. This toy is great toy for children who are starting to develop threading skills and can help improve dexterity, hand-eye co-ordination, colour recognition, tactile and fine motor skills.