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.

  /  Post natal   /  Lennon


Lennon was conceived out of love with the assistance of Oxford Fertility Centre to Hayley (32 at Lennon’s birth) and Paul (59), and was born in September 2015 at 38 weeks by emergency caesarean section. That was the last we saw of him that day. Lennon was born with Persistent Newborn Pulmonary Hypertension and Sepsis (which has nothing to do with him having Down syndrome) and had to be resuscitated at birth. Not a very good start. He had to be transferred to a Neo-natal Intensive Care Unit where he remained for about 9 weeks. Frankly he was not expected to survive and on more than one occasion we were told to expect the worse.


Having been diagnosed with the above, the very next day we were informed he had Trisomy 21 i.e. Down Syndrome. We had no idea before he was born and expected a typical little boy. At the time we thought ‘just add it to the list’, as he was dealing with massive problems in any event.

Were we shocked that we had a child who would need loads and loads of extra care? Yes, we were. Did it matter? Well of course it did, having a new child changes your life anyway but with Lennon the changes were just a little more exacting.  Amongst our fears were that he would face enormous prejudice in his life and would be pigeon holed and categorised as someone different. The fears disappeared with every day that Lennon fought for his existence. Even in those early days he showed strength and courage and to cut a long story short he made a good recovery from his birth problems.

Today Lennon is just a little boy who takes longer in developing some skills as quickly as a ‘typical’ little boy. He has low muscle tone and as such walking can be difficult for him on occasions, so instead of walking we do something else. His speech has been slow to develop so we have learned Makaton signing and communicate with a mixture of words and signs until his speech improves. Lennon is dextrous and can figure out how to operate his toys – and the remote control – without instruction. He is extremely inquisitive. He is naughty and he is good, he is cheeky, he is noisy, he is funny. His favourite food is Wagamamas and he adores Mickey Mouse. His achievements are hard earned but the important thing is he achieves. He gets there and we celebrate each milestone as any parent does. He mixes with typical and other children with Trisomy 21 and none of them notice the difference. Sadly some adults do but they really are in the minority. Lennon has a natural ability to make people smile. I am honestly not being biased about Lennon because nearly all children have the same abilities, you only have to look around.

We are proud of our son and think we are privileged to have him, he has taught us so much about ourselves and are much richer for this. Yes he has Down syndrome and some things take a little longer but he is just a typical little boy. Lennon is hard work but then all babies are. So are all children and teenagers just like Lennon will be.

As Lennon’s father I totally disregard any of his so called disabilities and treat him in the same manner as I did with my daughter. Anything that the health professionals have told us he could not do, he has shown everyone and proved them all wrong time and time again. From my experience I cannot see any reason why Lennon should be held back or unable to achieve anything he wants to. Bringing up a child with or without Down syndrome is both a privilege, honour and hard work! Most of all, it may sound corny but he is brought up in a loving and consistent environment.

So don’t be scared, embrace your child he/she is beautiful and part of you. Don’t bother about what the minorities think. It’s great fun bringing up Lennon, the future is as bright for him as for anyone. Go to the groups, meet the parents and siblings and you will realise how wonderful our children are. Your child has Trisomy 21 – just add it to the list.

By the way one day, Lennon will Captain the England Cricket Team according to me or become an Astronaut according to Mummy.