Life with Leo
CASE STUDY: The Yard, Dundee
Nicola and Ross Donnelly live in Dundee with their three and a half-year-old son, Leo. Born at 26 weeks, Leo has Cerebral Palsy, manifesting itself through developmental delays and visual impairment, and Hydrocephalus, a lifelong ailment caused by a build-up of fluid on the brain at birth.
Nicola and Ross became parents considerably sooner than expected when Leo was born over 14 weeks prematurely while Nicola was visiting a friend in London. Nicola said, “Although we had hope, we had no guarantees he would make it. It was a very traumatic time for us as a family, yet a joyful one because we loved Leo so very much and were happy to welcome him to the world.”
After three weeks, Leo was stable enough to be transported to a hospital back home where the rest of his family were waiting to meet him. With the 500 mile road trip deemed too risky, Nicola and Leo were transported by Lucy Air Ambulance from University College London Hospital to Ninewells Hospital in Dundee.
Nicola said, “That journey will stay with me forever. We’ve had a few blue light adventures since then, but nothing quite like that day. I will never forget what the pilot, nurse and consultant did for us that day. Putting a baby who was not even due for 11 weeks into a plastic box in a tiny aeroplane while supporting all his fluids, breathing, feeding and drugs, monitoring him and flying almost 500 miles is one of the bravest things I have ever seen anyone do.”
Three and a half years on, having endured over ten surgeries, Leo is a happy, confident and funny little boy who creates smiles wherever he goes. However, as he has grown, the challenges have become more evident. Leo is not yet mobile, has a visual impairment and needs care for every aspect of his life. Although he views his physiotherapy and other therapies as ‘play’, Nicola and Ross became aware that Leo needed specialist care and support to bring the best out of him and provide the nurturing, encouraging play opportunities he needs and deserves.
Discovering The Yard
Working for a local social enterprise and well-connected within Dundee, The Yard was on Nicola’s radar long before she approached them for a visit. The couple has already done what most parents do from Baby Sensory and swimming to soft play. However, these activities became more challenging as Leo grew.
“Essentially, the gap was starting to widen between Leo and the other children and, although lots of activities were logistically accessible and welcoming, Leo wasn’t quite getting what he wanted or needed from the activities, so we started scouting around. There’s lots to do in and around Dundee but, as two working parents, we were keen to try something at the weekend when we could all get involved.”
Also, having grown up with a disabled sister, Nicola already had a good understanding of adapting mainstream experiences for children with additional needs but was keen for her husband to share that insight.
Nicola said, “The first thing that struck me was how welcoming and enthusiastic the staff were. Beyond that first application form, you don’t have to explain anything, you just come in and play! I’m pretty open about our journey but some parents struggle and it’s quite good not having to download your whole story everywhere you go, especially if you’ve reached crisis point. Also, some families don’t have a diagnosis yet, but that doesn’t matter at The Yard.”
Having become regulars during 2020, when The Yard was able to stay open, Nicola can’t wait for The Yard to re-open fully in the months ahead.
“We continued to go as much as we could during the pandemic, especially when we couldn’t visit relatives or go to any other activities. Because we could only go one adult at a time, the other one got a couple of hours to themselves, which was nice a nice break.
“For us, there are a number of factors which keep us coming back. It’s not about the toys – it’s about the safe space where staff understand what your family’s facing and how to get the best out of your child. I almost exhale when I walk in and I know that, if Leo’s having a tough day, he can kick off and it’ll be fine. Basically, the staff have seen it all before and give us ideas to try at home from games and activities to strategies for dealing with tricky days.”
Nicola and Ross are also gaining greatly from the other families who attend The Yard.
“Leo has cousins but, when we first started going to The Yard, it was the first time I had seen him play with children who aren’t in our family for almost a year. I’ve been dropping him off at the front door of nursery in my mask and hadn’t seen him playing with anyone else. There’s a really encouraging and open atmosphere at The Yard. Leo is pretty confident and makes friends wherever he goes but The Yard staff can get him to try things he won’t try for us. We might say ‘Leo won’t like that’ but then we see that he’s up for new things, new challenges and it’s so rewarding to see. We also had an amazing experience with the brother of a child who attends The Yard. Because he’s used to dealing with his sister, he knew exactly how to play with Leo, how to initiate that play. It’s the first time I’ve seen him make a friend…it was like watching a masterclass in empathy from that other boy and that sort of experience benefits everyone!”
Almost a year on from their first visit, The Yard has had a profound impact on the family’s lives.
As well as giving Leo a ‘safe place’ where he can be himself, Nicola and Ross now have a place where they can relax, amongst staff who really ‘get it.’
“When you have a child with additional needs, you build resilience and learn what you need to do to cope. The Yard has become part of that formula, somewhere to go, somewhere we’re all happy, where you don’t have to put a face on. We have a lot of fun with Leo and, when he achieves something, it’s very special and balances out the tough days. The staff were saying he was becoming bolder and braver with every visit which is just fantastic – we really can’t wait to get back.”