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.

  /  Growing up   /  Anghard aka ACE aka The Girl

Anghard aka ACE aka The Girl

Our lovely daughter was born weighing 3 lbs 9 oz, five weeks prematurely with Down Syndrome (DS) in March 2006, had open-heart surgery to close three holes in her heart aged 16 weeks. She recovered fully from this and entered mainstream primary schooling supported by access to a Specialist Resource Base (SRB) within the school. In the autumn of 2017, aged 11, she became the first pupil with DS to attend her High School, where she is in the mainstream population supported by one-to-one assistants. We are now eight weeks into the term, both school and Ace feel that she is settling-in nicely and she has just been voted Form Captain. Each week she also attends classes or lessons in athletics, ballet, Guides, swimming, trampolining, and judo. She also enjoys riding and climbing.

Did Nikki (Ace’s mum, my wife) and I feel positive when DS was diagnosed? Angharad was born in hospital on the Tuesday and the diagnosis was confirmed on the following Friday (complete with sad faced-clinicians and “I’m really sorry to have to tell you that…”). There had been ‘markers’ indicative of DS during the pregnancy – length of femur, holes in her heart, and of course, maternal age (Nik was 42 when Ace was born, I was 48); we’d had time to reflect on things and gather information.

We’d previously had two miscarriages and there was no way that we would give up on this pregnancy. We felt that certain clinical staff (including a Midwife, if you can believe such an oxymoron) constantly reinforced the asserted negatives about DS. You know: how ‘their’ lives could never amount to much; ‘they’ are prone to every condition going; ‘they’ will be intellectually impaired; ‘they’ are a burden and a cost. We had all of those, usually followed by a reminder that it would be easy to check via an amniocentesis test and, “if necessary” a termination could follow. The majority of staff were not so negative but a significant minority were. We told them that we had no intention of having an amnio and to write on the notes that we did not want to be asked again. Guess what? We were asked again. And again.

When the clinician confirmed DS that Friday we bade him leave us and we had a little cry for thirty minutes or so until we asked one another what we were crying for. I think we cried because we were expected to. Once we wised-up we remembered that we had our beautiful daughter in a cot down the corridor in the Special Care Baby Unit. We went back to her side and looked forward to our new lives. I can honestly say that we’ve never looked back.

Would it have been useful to be pointed to written material that spoke honestly but without negativity about DS? Yes. Would it have been good to be introduced to families of kids with DS? Yes. Would it have been reassuring to be given links to clubs and societies, to blogs and websites? Yes. Thanks in part to our generation of parents, and even more to the social media revolution, much more material is available to would-be parents now. I trust that you will be able to find factual and non-skewed accounts of life in the DS Community.

So, am I positive about DS? Of course, I am. Her extra chromosome is a full part of who our daughter is. She is fully human and just happens to have DS, in the same way that I have Parkinson’s and Nikki has Multiple Sclerosis. You will read about – and meet – young people and adults with DS who have degrees, who have passed their driving tests, who run their own businesses, who get married, who live independently, who win BAFTA awards, who climb mountains, who – simply put – take part and excel in the whole range of life’s activities.

There are some things that The Girl finds difficult because of the effects of DS. In her case she finds abstract logic difficult and, so far, riding a bike without stabilisers is simply impossible. Instead, we let her focus on maths (which she loves) and judo and swimming (which she is very good at).

Therefore, it’s not that she can be good but not as good as a ‘normal child’; she IS a normal child who happens to have DS. As would-be, or new, parents, you have not been cheated in life’s lottery; you have won someone more special than you can imagine. We wish you every blessing.

PS, a few practical tips: always aim high; don’t let anyone tell you things will be impossible; plan ahead for nursery, schooling, Statements, whatever; do use some of the online resources – there is a lot of great stuff out there. Give your child a range of peer groups – join groups of and for DS and other non-typical kids, but also join groups of predominantly typically-developing kids. Let our kids see that the world is their oyster. Familiarise them to this world and by doing so let the world become familiarised to them.

Angharad is a vital presence within her school and our community and has brought the best out of her parents! In my Facebook page/blog I address the joys and frustrations of being a parent and I necessarily consider issues surrounding DS, education, development, nutrition, health and so forth. It is supported by pictures and videos and links to many useful or informative posts and news.