Positive about Down syndrome

Positive about Down syndrome provides information and support to new and expectant parents of a little one with Down syndrome.

We have amazing online support for our families, we know how important it is for them to have access to accurate contemporary information and so provide our book #NobodyToldMe the truth about Down syndrome to families and literature to maternity units.

We have recently introduced online early development groups for our preschoolers, baby Makaton signing courses for new parents and Makaton training for members’ nurseries/childminders.

We believe every parent should receive the best possible care and support.

We believe the arrival of every baby with Down syndrome should be celebrated.

We believe every child with Down syndrome should be given every opportunity to flourish and thrive.

  /  Into Childhood   /  Erin


There are so many preconceptions about all aspects of our lives, which cannot always be challenged until we have the experience of actually living them. So it is with the condition of Down Syndome. As grandparents of Erin our youngest grandchild I want to tell you about the journey to where she has reached her tenth birthday.

The news of Erin’s diagnosis was unexpected, and of course we were upset and worried about the future, not only for Erin, but for her parents and three year old brother Billy. Obviously there have been physical, emotional, unexpected and practical challenges for Erin and her parents over the past ten years, and we so admire how they have met and dealt with them with so much positivity and love. But what do I say about the journey from a grandparent’s view. Despite having natural feelings of worry and uncertainty being part of Erin’s life has been a positive, loving, amusing and an enlightening experience which has further enriched our lives. Erin has been in mainstream education, and just like the school events we have attended for her brother and two older cousins, we have had the same sense of pride for what she has achieved. Her writing and reading is good and her enthusiasm for learning and general curiosity is so encouraging. On her tenth birthday we met her school friends and had a great time at the trampoline factory, and we often learn of the details of her latest sleepover. Erin is great company and a really good conversationalist. She is keen on art and loves creating pictures with accompanying written messages to the recipient. On her last visit to us I took her swimming and people I had swum alongside for many sessions and hardly spoken to were soon recruited and busily chatting following a polite ‘Excuse me, are you enjoying your swim’ from Erin. Similarly, as a complete novice of pizza buying, and at a loss in the supermarket, Erin took control and with another confident ‘Excuse me……….’ problem solved! Make no mistake, I do not always have my Grandma rose coloured glasses on, for all her virtues, Erin can be stubborn, exasperating and downright naughty – in fact a perfect example of a ten year old girl.

Do we worry about the future, of course we do, and we are aware there are many uncertainties ahead, not only for Erin, but all of our grandchildren. However we would not for one moment allow this to overshadow the great joy, and most of all optimism we feel at this moment, particularly for Erin who is proving to be an enthusiastic, enquiring, confident, considerate, articulate, friendly, often exasperating and opinionated, beautiful young lady.