Choosing leisure activities when you have a child or young person with complex needs is, well, complex – as Amanda Mortensen can testify. The Compass Team spoke to Amanda recently about how she and partner Neil organise the family’s leisure life. See our blog, ‘Leisure ideas if your child or young person has complex needs’ for more ideas. After that, we’ll be blogging with more general ideas for the summer holidays.
Brighton-based Amanda is mum to 16 year old Livvy who has complex needs and to three other children: Harry (14), Daisy (9) and Grace (6). Livvy, who’s had a Compass Card for the last 14 years, has a rare form of epilepsy called Lennox Gastaut which is drug-resistant. She has severe epilepsy, severe learning disabilities and is pre-verbal. She’s usually a wheelchair user, but the family encourage her to walk when she can.
Leisure is often a juggle that’s dictated by how Livvy’s feeling. “Livvy’s health changes day to day, so we often make last-minute decisions, depending on how well she is and how far we think we can push her”, says Amanda.
Sensory things work well
Livvy responds to sensory and visual things. “She wasn’t interested in Swan Lake, but she loved the circus performance we took her to recently. It has to be in her face with unexpected things happening. Staff at the Theatre Royal in Brighton are very understanding and the wheelchair spacing is good, so we’re regular visitors there.
Sea Life in Brighton is a firm family favourite and Amanda’s invested in an Annual Pass, which is £45 for the Compass Card holder and free for a carer. Because of Livvy’s high care needs though, Amanda gets free passes for two carers. “Sea Life is sensory, visual and calm and there are lots of things at Livvy’s level she can look at – plus there’s a Changing Places facility close by. The only criticism I’d have is that the glass-bottom boat isn’t wheelchair accessible.”
From the cinema and on to the beach
The Odeon cinema in Brighton works well for Livvy and family too. Here the Compass Card holder gets a free ticket and a carer goes for free. “They’re really friendly there. For Livvy, she needs big scale, colourful things to impress her, so the big screen works well.”
Livvy enjoys beach trips and you can hire beach-friendly wheelchairs in Brighton and take them down to the edge of the water. “It’s a bit of a faff to book them, but Livvy really enjoys it, so it’s worth the effort” says Amanda.
Have car, will travel
Amanda and her family are prepared to travel to places that work for them, so they often travel outside of Sussex. “We usually drive. Livvy likes the car and the trains often don’t have a wheelchair ramp ready, which I know a lot of people complain about.” Amanda rates the Natural History Museum in London highly. “Livvy has a visible disability, which probably helps, but you’re prioritised there. They take you through the exit so you don’t have to queue and there’s loads to see and do. I think that’s what our families need – we want to be prioritised, but not patronised.”
Meticulous planning goes into every single trip. “For ideas, other families and local parent groups are a great source of information. Bear in mind some places are really geared up for disability; with others you need to be more assertive and be prepared to call ahead to make sure you’ll be treated well”, says Amanda.
“It doesn’t take much for a trip to be delayed or ruined so a lot of thought goes into it. I think of the worst-case scenario and plan for that. Livvy’s medically fragile, so I laminate her latest hospital letter for example, which lists all her current medications and we always take it with us.”
With all the complexities of organising a trip, the toll on parents can be significant. Amanda has a useful piece of advice. “Don’t over-face yourself when you’re not feeling robust. Only try new things when you’re feeling up to it.”
Adele comes up trumps
A recent trip with Livvy to see Adele at Wembley Arena made all the planning worthwhile. “Livvy was totally enchanted by it all. Events have to be very high impact for Livvy to take note and she certainly soaked in the atmosphere and remained alert throughout. We had a balcony space with four other wheelchair users, almost like our own private space and Livvy could walk around and chill out if needed. We were fast tracked through the queue to get in and the stewards could not have been more helpful. When she had a seizure they were respectful, but on hand if we needed support.
“The only downside was all the disabled parking sold out really quickly so we had to find something on the day. Next time I would book months in advance. Livvy needs two carers at an event like this and we were expecting to pay full price for one of us, but they gave us two carers free, which is amazing. No Changing Place, but there was a disabled toilet seconds away. It was very crowded at the end with 98,000 people and the police helped us find an alternative route out. We couldn’t believe Adele then cancelled the next few dates – lucky Livvy! Now we know Wembley works, we are planning our next event – hopefully Ed Sheeran and Livvy’s dad is planning a football match!”
So what new things does the family have in mind this summer? “I’d like to try Earnley’s Butterflies, Birds and Beasts near Chichester and I’ll be looking at some of the festival deals on the Compass Card – there are quite a few and the whole family would enjoy that.”
We’re offering prizes for your best summer ideas
We’re blogging about leisure over the summer holidays, but we want ideas from you and we’ll be offering prizes for the best ideas. The ideas could be Compass Card offers, or have nothing to do with the Compass Card. You can comment below by logging on with your Facebook, Twitter or Google account (or if you prefer, email email@example.com or message us at Amaze Compass on Facebook) – and answer all or just one or two of the following:
1. What’s your ‘Failsafe leisure activity’ – the one that more or less works every time? Why does it work?
2. What’s your recommendation for ‘Leisure on a budget’ when money is tight? What does it cost and why do you think it’s a bargain?
3. Rainy day rescues or shelter from the heat – if you need to go undercover, what places do you recommend and why?
4. Do you have any other leisure tips or ideas for the summer? Please share them!