“……more than medical”

We are delighted to join forces with Rebekah Docherty and Michelle Clark from Lose the Label CIC – a grass roots initiative challenging perceptions about life with Down syndrome – to develop a collaborative booklet  “… more than medical” providing insight into the realities of family life with a baby, child, teenager or adult with Down syndrome in Ireland today and we are inviting you to contribute.

“… more than medical” will be a resource for parents with a pre or postnatal diagnosis of Down syndrome for their baby and an essential tool for professionals and healthcare workers to ensure complete and balanced information is provided to all parents.

We are able to do this thanks to a very generous donation by Ian and Heather Fleming in memory of Ian’s sister Anne, who had Down syndrome, and we are so grateful to them for their support.

The booklet will be distributed free-of-charge to:

  • Our branches
  • Maternity Hospitals
  • HSE Early Intervention Teams
  • Down Syndrome Ireland’s Clinic in Tallaght Hospital, Dublin
  • Down Syndrome Ireland delivers training to medical professionals on how best to inform parents – we will distribute copies to medical professionals at these sessions.

The booklet will also be available to view and download here once published.

We would love parents of children with Down syndrome and adults with Down syndrome to contribute their experiences. You do not need to be a member of DSI to put your story forward for consideration.“… more than medical” offers a variety of honest and balanced experiences and perspectives about the realities of family life with a baby, child or adult who has Down syndrome today.Our aim is to provide this invaluable resource to new families here in Ireland.
“… more than medical” is about the realities, it’s about balance, and complete information for new families.  We invite contributions from families and from adults with Down syndrome.

We ask you to share your personal experiences under the following headings in 350 words or less.  Should your contribution be selected for inclusion in the resource, we will advise and request 2-3 high quality images be provided.

  • Initial thoughts/feelings at point of diagnosis
  • Assumptions
  • The reality
  • The challenges
  • The medical
  • The highlights
  • Family Life

Please share you answers under the following headings in 350 words or less. If your contribution is selected you will need to send 2 – 3 images with your contribution.

  • What is your name?
  • How old are you?
  • Where are you from?
  • What is the most important thing in the world to you?
  • Tell me about your school
  • What was the best thing in school?
  • What was the worst thing in school?
  • Tell me about your family
  • Tell me about when you were a child
  • Tell me about your life now
  • Tell me about things you like doing
  • Do you have a job?
  • Would you like a job?
  • What kind of job would you like?’
  • Tell me about your job
  • Do you get paid?
  • Do you like your job?
  • What days do you work?
Please send your contribution to Rebekah@losethelabel.co.uk only.
Please note; Lose the Label CIC is in charge of the decision making process; Down Syndrome Ireland is not involved in any way in this process.
**The deadline for receipt of contributions is Friday, November 17th, 2017**
Who is Lose the Label CIC?
‘Lose the Label is a grass roots initiative challenging perceptions about life with Down syndrome.
‘We begin by advocating for a more positive language when describing children and adults living with Down syndrome.
‘We project the truth about life with Down syndrome through our photographic features, educational presentations, exhibitions, literature and media communication.
‘Our activities are intended to provoke thoughtful responses by challenging outdated ideas about Down syndrome, and changing the impersonal language that labels and limits the life opportunities for people living with Down syndrome.
‘We work – together – with families from the Down syndrome community to ensure the experiences and information we deliver reflects their realities.  This enables our audiences to consider their own perceptions, and the language they adopt, towards a child or adult with Down syndrome.
’Lose the Label is registered as a Community Interest Company.
Registered Company No. 09227460.