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Information for new Down’s syndrome parents in the UK

Posted in Campaigns, Support services by Matt at WelcometoIllinois on October 16, 2008

Given our recent experience of having a baby with Down syndrome I thought it would be interesting to take a look at the information given out to parents in the UK, or at least at Queen Charlotte’s & Chelsea hospital.

I was surprised not to receive this leaflet for new parents from the Down’s Syndrome Association, although given that we had known since March that our baby has Down’s syndrome we have already received two or three copies and our experience may be a little different from other parents I suspect.

The New Parents Guide is a really good information resource, with a Q&A, contact information and advice on dealing with the news, how to tell others, and likely implications. It manages to balance discussing some difficult issues with a positive outlook without being patronising.

As for the information we were given after the birth. The first was Supporting People with Down’s Syndrome, again from the Down’s Syndrome Association.

It’s a brief overview of the DSA and what it does but doesn’t really provide much information other than that. I would hope that parents that have just found out that their child has Down’s syndrome would also be provided with the New Parents Guide, although of course they would also be involved in the counselling we received back in April, and I’m pretty sure it given to us then.

The second information resource we were given was Bright Beginnings, from the Down’s Syndrome Research Foundation, an organisation I was not previously aware of.

It’s a much better source of information and includes medical information and stories from parents about what it’s like to bring up a baby with Down’s syndrome, as well as one from a woman with Down’s syndrome. It’s a useful booklet for new parents, although a lot of the information is US-centric and it was evidently published at least four years ago.

Having devoured an enormous amount of information about Down’s syndrome since March there wasn’t a lot in either that was new to us, but I think Bright Beginnings would have been particularly useful had it been handed to us back then.

Of course we are only just entering the network of Down’s syndrome-related care and service providers, and as I’ve previously noted there was a lot more information to come.

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  1. […] also took a look at the Down’s syndrome-related information and range of disability support services available to new parents in the […]


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