Adapting to Lockdown & Smelling the Roses

Like so many regional groups, Cornwall Down’s Syndrome Support Group (CDSSG) offers its members much needed information, friendship and support.

However in this time of uncertainty and social distancing support groups are having to be a bit more creative with how they deliver their services such as meet ups, coffee mornings & youth groups..

A new word has been learnt – Zoom..until COVID19 came along most people hadn’t heard of Zoom and now it’s quickly become a household phrase across the globe ‘don’t forget to zoom granny at 4 o’clock’ has become common place.

The advent of zoom and other online meeting platforms has helped CDSSG to adapt to our new ‘normal’ and we now hold regular zoom dance & social sessions for our members and, after conquering the correct mute etiquette, the sessions seem to be working really well.

To see faces and hear the laughter of our friends on screen has been a lifeline for many who are finding staying home quite a challenge whilst adjusting to change in routines and loss of school or college.

CDSSG is known also for its books as means of offering support globally and we’ve had to make changes here too. For example Tea At Grandmas is a book that speaks to the grandparents in our community and it’s creation has birthed an almost 600 strong membership to the UK Grandparents Chat Group on Facebook – we asked them how about the grandparents? How is technology helping them in these tricky times?

Sarah: “I’m coping fairly well with lots of photos sent by Saffron’s mummy and daddy and when this is over she’s going to get the biggest longest cuddle she’s ever had.”

Lianne & Justin: “We are coping well with isolation with our Granddaughter Willow, but I worry about her missing her friends and nursery. She was developing so well in that environment, we are trying hard to keep that going but I do worry about the impact this is having on her.”

Jane: “Missing Ava and her brother and sister but it’s lovely seeing her starting to sign and walk on FaceTime and videos. She’s come on quite quickly in the last month or so.”

A wealth of support and friendship has developed in the U.K. (strictly grandparents only) group, there’s a real sense of community for grandparents to share their experiences and celebrate their grandchildren’s successes, however big or small.

UK group:

For overseas families, International Group:

Going to School is one of CDSSG’s most successful books and is gifted to ALL preschool age children in Cornwall via the BookTrust, a whopping 30,000+ copies to date!

To help families adapting to the school at home scenario, CDSSG have made the Makaton Download that accompanies the Going To School book free of charge for the duration of lockdown. The download has first/next boards and visual timelines to help structure the day and promote the idea of ‘numbers now, snack time next’ something we think a lot of newly home schooling families will value!

Having just launched Looking Up 2, a reworking of the original Looking Up book from 2014, which CDSSG gifts to all new families in Cornwall shortly after their baby is born via our Looking Up Packs, we are finding that although the physical mechanism of gifting Looking Up
Packs is going well in the hospital, sadly we’ve had to halt shipping for all of our books until restrictions are lifted.

Fortunately in the case of Looking Up 2, we created a short film of the book’s pages set to a beautiful song called ‘little bird’ by Our Atlantic Roots, who’s female vocalist has a sister called Emily who happens to have DS. It’s a really fitting track to accompany the uplifting images, and it gave us goosebumps when we first heard it!

Having this film has made the book accessible even when we can’t get to the post office, we are thrilled to know that anyone can view Looking Up 2 anywhere in the world from this link on YouTube or via our website.

In these uncertain times, when things all seem to be either on hold or completely up in the air, what we can be sure of is that our families are resilient; although things are challenging for every family in lockdown almost all over the globe, we know that better times will return and this too shall pass. Even the Queen said so, so it must be true!

Many of us are choosing to look at the silver linings of unprecedented times as an opportunity to enjoy the time at home to appreciate our families and to make memories together where we can.

Of course it’s not all cupcakes and rainbows for families of children with additional needs but then it isn’t exactly a garden party for any family right now is it?

Lockdown is a bit like a reallllly long version of that week between Christmas and New Year where we aren’t quite sure what day it is or what we are supposed to be doing.  Only with less chocolate.

But we are all in this together and hopefully some of us now know the names of our neighbours and have been able to step off the Merry-go-round of our hectic lives for a few perculiar weeks!

Finally – we all know to follow the advice to stay home and stay safe but here’s an extra request – stay fabulous, keep finding entertainment and escapism where you can – there are quite a few of our families living out loud in lockdown in a FaceBook group

It’s really no surprise to see so many DS families embracing the idea of ‘living in the now’ by putting their bins out in their ball gowns, not when we are already so used to stopping to smell the roses.

Stay home, stay safe & stay fabulous xx



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