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   /  Sam


My name is Paul and I’m the very, very proud father of two lovely boys, Sam, aged 6 and Will aged 4.

When I think back to the time of Sam’s birth and diagnosis I often wish I could go back in time and have a reassuring chat with myself! A lack of knowledge and experience caused me to fear the worst, but I couldn’t have expected how unnecessary that was and how ace things would really turn out. It actually makes me feel a bit silly in retrospect, but it’s all understandable as well!

I met my lovely wife when we were both in our mid-thirties. We married and, both wanting a family, decided we should get on with it! All was going perfectly until we found out the sad news at the first scan that we had lost our first. It was hard, but we were subsequently amazed about how many other friends of ours had been in a similar situation. We dusted ourselves off and were lucky that it wasn’t too long before my wife was pregnant again. Even more excited than before, we planned for our new arrival. Sam was born 11 days early but healthy and beautiful. No words can ever describe my utter elation at being a father for the first time, not no mention the wave of love I had for my wife throughout the birth. I really remember being on such a high that first day, then finally heading home and letting all the family know the fabulous news.

The following day I was back in hospital to see Sam and Lynn, me still grinning like a maniac, singing, saying cheery hellos to strangers etc! A little later we were led into a small room with Sam and sat down. It was there that it seemed the ultimate natural high was instantly replaced with a low like I’d never known before and we were told Sam had Down Syndrome. We couldn’t have been any more surprised and any less prepared. The contrast from the high to the low was the biggest shock to the system. Lynn and I hugged and the three of us went back into our room. I clearly remember then looking at Sam wearing a little baby blue knitted hat, wrapped up, looking beautiful, helpless, sleeping peacefully, blissfully unaware of the chaos in grown – up world. I clearly remember looking at him feeling desperately sad but still just so elated that he’s my new little boy. The frustration that the intoxicating elation had just been taken away from us was really hard. I just felt so sad for Lynn as she was clearly trying to compute the same. I felt that shared sadness with my wife, I felt anger at the situation, remembering the nurse who did the scan with the non-existent bedside manner, I felt a mix of feelings I had never felt before. Talk about confusing!

When I went home, I did what most dads would probably do, opened a beer and hit the internet. I was just suddenly aware of a vacuum of knowledge and understanding of the situation we now found ourselves in. To be fair, I probably have many knowledge vacuums that I’m just not aware of yet! The problem with the internet is that there’s just everything out there from good to bad to worse and so it’s not easy to find comfort and reassurance there. That only really came from family, friends and our wonderful local charity, The Ups of Downs. We are both lucky that we have good, strong close families and friends and they all really helped. They just saw Sam in exactly the same way, nothing had changed, he was still our beautiful, little boy and they were exactly right!

Jump forward six and a bit years and how did it pan out? Well, as I say, I just wish I could have taken myself down to the pub for a good natter! It was hard to initially define the difference of exhaustion and confusion that any new parent has with the added angle of Sam’s condition. I think in truth there’s actually very little difference really, you’re just tired and emotional either way! I was expecting it to be way different but it isn’t, it’s just as much fun, if not more so! The best kept secret is that we got just a tiny bit longer to enjoy Sam reaching his ‘milestones’ than kids with fewer chromosomes and parents wanting to rush them through their development! The joy of seeing him walk for the first time, for instance, brought me right back to that natural high I first got addicted to! So now Sam is a very healthy, chatty, bright, funny, loving and opinionated! He takes himself to the loo, brushes his teeth, dresses himself, loves reading and winding up his brother, both of which he’s very good at! All the things any lesser chromosomed child might be doing! We are now so lucky to have a younger brother for Sam, William. He is 23 months younger and has given us the opportunity to experience the best of both worlds, as well as be a great play mate and buddy for Sam. The truth is they absolutely run rings round us, its hilarious (most of the time!) Both boys have been through the same nursery. We started Sam a year late into school and he’s just loving it! He’s flying, learning reading and phonics at the same rate as his classmates and just getting on with it! Its also really fascinating to see that Sam isn’t in any way pre-shaped by having DS. The nature not nurture thing rings true. Our two boys have very different characters, independent of DS. This whole thing of ‘aahh, but they are so loving’, I think is a well meaning, if a little naive response but don’t be fooled! Sam has no less a range of moods and behaviours and if he doesn’t want to do something, he’s no less able to make that clear! (I actually secretly love a bit of that attitude, he gets it from his mother’s side!)

It’s now that I look back and wonder what all the fuss was about! Embarrassingly, I remember thinking I would have done anything to have changed that diagnosis. Now, knowing what I know and having had the last wonderful six years, I wouldn’t change a thing. I can’t imagine how it could have been more fun, rewarding and fulfilling. Changing anything would have meant changing Sam and I can’t imagine a son I would be prouder of. On that front, one of the best things ever is going to places with my lovely family and feeling like a big, proud dad. I do feel that DS draws positivity and positive reactions from others around you and it’s just great! There has been nothing negative; the world is changing for the better in its understanding, appreciation and inclusion of people with DS. For me, if the last six years was this good, I can’t wait for the rest!

So, Dad to Dad summary:

Diagnosis – really hard for you both, but it makes you stronger.
Next bit – permanently tired, more highs than lows, but like any new parent.
The bit after – it just gets better and better and better.
The bit after that – you feel daft looking back, wondering what you were so worried about.