Meet Finley! Spotlight on Down’s Syndrome

Meet Finley, a two-year-old stunner who wears a permanent smile on his face and makes friends with people wherever he goes. To mark Down’s Syndrome Awareness Week, our Helen Skelton interviewed Finley’s mum, Jemma, who is right where she should be: wrapped around his little finger!

When was Finley born?
Finley was born in July 2014. He arrived three weeks early, so it was a bit of a surprise!

Tell us about Finley! What does he like? What sort of little boy is he?
Finley is just the most sociable little boy. He takes life in his stride and is so laid-back. He is a happy, smiley little man – definitely a ‘people person!’ He loves to interact and engage with others with waves, smiles and blowing kisses. He attends a mainstream nursery and also goes to a childminder’s where he has so many friends – most of them are girls, he loves girls! Finley doesn’t talk yet, however we use Makaton to sign and communicate and so far he has over forty signs he uses regularly – he’s picked it up so quickly.

What’s it like being mum to Finley?
It probably sounds a bit cheesy, but it really is the best job in the world, though I won’t deny that it’s tough at times. With Finley having Down’s syndrome, we do have more professional input and appointments than other children – sometimes, we can have 2-3 appointments per week, which can be draining and pretty hectic. I work part-time and I am very fortunate to have lovely, understanding employers who don’t mind when I have to chop and change my days at work. I am so proud of Finley and everything he has achieved so far in his little life. He has overcome so many obstacles already.

Did you have any idea Finley would have Down’s syndrome? If not, how did you feel when you found out?

No, we didn’t know or suspect anything. When I went for my 20-week scan, a nurse suggested that I should have the Down Syndrome Screening as I was ‘an older mother!’ I was only thirty-one, so I certainly didn’t feel ‘old’ but it was only a blood test, so I decided to go ahead with the screening anyway. A couple of weeks later, I got a letter through the post with my screening results: I was ‘Low Risk with a 1 in 850 chance of having a child with Down’s syndrome.’ So, after that, we didn’t give it a second thought …

When Finley was born, he was the most perfect little man we had ever seen. Then approximately one hour after his birth, a Senior Midwife came into the room. She held our hands at our bedside and asked if we had noticed anything different about Finley. He was forceps-delivered so we joked that he looked like a Bond villain with a little mark across his face. She told us she suspected he had Down’s syndrome. Apparently, I told her that I appreciated her being honest but I thought that she was wrong. She then asked if she could get a Neonatal Doctor to come and see Finley, to which we agreed. I don’t remember much of the next 24 hours really, it was a blur with lots of doctors and specialists coming in and out of our room to see him and scan his heart and check him over.

I do remember being in bed that night, searching Google for pictures of babies with Down’s syndrome and comparing them to Finley – I think I was trying to convince myself that he didn’t have it. I also remember having a teary moment with Ryan, my husband. He works away quite a lot of the time, I worked full-time and we were used to a certain lifestyle with lots of lovely holidays abroad. I told him we would have to re-evaluate everything – I would have to quit my job and he would need to look for a job which meant he would be home every night. I think panic had set in and I didn’t really know how I would cope. We didn’t have any experience of Down’s syndrome and really didn’t know what the future would hold. We also had lots of questions for the doctors and midwives, most of which they couldn’t answer: ‘Would Finley go to a mainstream school?’, ‘Would he ever learn to drive?’, ‘Was his Down Syndrome on the milder side?’ I think we were just desperately searching for some hope. I just wish we knew then what we know now and how much of an amazing journey we would have.

I remember coming home from hospital and getting the phone call from the consultant who had sent Finley’s blood away for testing to determine his diagnosis – one of the first things he said to me was, ‘I am very sorry …’ – looking back now, I wonder what he was sorry about. We have a wonderful, charming, cheeky boy who makes our lives so much better. There’s certainly nothing to be sorry about!

What’s been the most challenging thing since becoming a parent?
I found baby groups quite stressful at first. Lots of mums chatting about their ‘perfect’ babies. I decided very early on I would be open and honest with others at these groups. I explained that Finley had Down’s syndrome and that if anyone had any questions, I would be happy to try and answer them. I think this helped and I also think it made others within the group more understanding – we still have some great friends we met during this time.

What’s the best thing about being a parent?
The smiles and the cuddles and the giggles we have! He is a very cheeky, affectionate little boy and the rewards we get from him are huge. He is taking a little longer than other children to reach his milestones, but when he does the celebration and the feeling of pride is amazing, like all the time and effort you have both spent to get to that point has paid off.

How much of your life has changed since becoming parent to Finley?
At first, I was worried that my life would change massively. It did, but we adapted to the situation. I went from working full time to part time. Ryan still works away just as he did before and we still go on lovely holidays as a family. So yes, life has changed but it has changed for the better. Occasionally, Ryan and I go away for a weekend on our own and we spend the whole time chatting about Finley! I really don’t know what we used to talk about before he came along, we are both bursting with pride with how well he is doing.

You’re pregnant with your second baby – congratulations! How are you feeling about the new arrival?
Very nervous but excited! Finley does demand a lot of my time and he can’t do things that other children his age are able to do, such as self-feed, walk, talk – so I don’t doubt that I will have my hands full with two of them at first. But I also know how caring and gentle Finley is. He will adapt so well to the new arrival and will be a wonderful big brother. Lots of his specialists have also suggested that having a new baby will help to encourage Finley on with his development, too, so it will be interesting to see if that theory is correct.

Is there anything that helps you enjoy/make the most of being a parent?
Having friends around certainly helps. I think our friends see past Finley’s diagnosis now – he’s just another little boy on a play date. Even though Finley has Down’s syndrome, we still go through the same issues, including fussy eating, terrible twos and sleepless nights. We all have the same things in common and things to talk about! It’s those special times I look forward to with Finley. Bath times are such a giggle and usually end up with us both soaking wet. He also goes crazy over In the Night Garden so we always try to have a cuddle and watch that before bedtime. Finley sees pleasure in such simple things in life that it really does make you take a step back and realise how lucky you are.

What is your favourite thing to do with Finley?
We love days out as a family and as Ryan works away, any time we do get to spend together is special so we try to make the most of it. We have a motorhome, so try and go away in that a couple of times a year, which Finley loves and has adapted really well to. To be honest, any time we spend together is fun; even a simple trip to the supermarket ends with Finley making friends and ‘high-fiving’ other people doing their shopping.

Do you have any advice for families who have received a diagnosis of Down’s syndrome?
I spent a lot of time on Google when Finley was first diagnosed and Google is not always your friend in situations like this. Although the diagnosis is a scary one, and you will be following a different pathway to the one you had planned, I can’t put into words how amazing and how rewarding the journey is! I know that some families have some medical issues to face alongside the diagnosis – we were lucky with Finley as he didn’t have any other issues – but the first time you see your baby, that feeling of love never goes away.

Finley has made us better people and taught us so much. He has slowed things down for us, we have met people we would never have met and come across services we didn’t even know existed – the support network is there and it is huge, you won’t be on your own. The opportunities available for children with Down’s syndrome now are vast even compared to what was around ten years ago. The Down’s Syndrome Association are a great source of support and help, they even offer free membership to new parents for the first year, and they send out regular magazine and newsletters which really are inspiring. As a parent of a child with Down’s syndrome, you become an advocate, a campaigner and your child’s number one fan!

With thanks to Jemma and Finley for sharing their story.

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