March 21st marks World Down Syndrome Day, the theme for 2022 is ‘Inclusion Means’. Over the next couple of weeks we will publish a series of blogs written by our members about what inclusion means to them. Today’s blog is written by Pippa’s mum, Samm Gee.
When you have a child with a disability, inclusion is one of the most important things you can hope for. It’s fundamental to your child’s wellbeing in almost every part of their life – their home and family life, their school, their friendships, their hobbies and their social life. It affects siblings too – inclusion is important as a family when we visit places such as theme parks, hotels, shops, restaurants, theatres, sports venues – in fact, pretty much everywhere.
Ever since Pippa was little, we have been very fortunate to encounter many clubs, activities and establishments that strive to be inclusive. Strive is a key word – people and places may not always get it right first time but the importance is having people who are willing to listen, willing to learn and willing to adapt things to become more inclusive. It is these people who have helped Pippa learn and enjoy swimming, riding, dancing, performing, archery and Girlguiding. People who have got to know Pippa and then made adjustments, adapted things and “thought outside the box” to find the most appropriate, stress-free and fun way to teach Pippa these various skills. People who have never underestimated or put any limitations on what Pippa can achieve – they have just taught her step by step and helped her to achieve each new goal along the way. As a result, Pippa can now swim 200m; canter and jump on a lead-rein and trot on her own; learn dance routines and perform on stage in theatre school productions; load arrows and shoot independently at archery, hitting reds and golds regularly; and work her way through the Girlguiding programme achieving her bronze and silver awards so far. These achievements are testimony to the importance of inclusion and the difference good, positive people can make.
In school too, inclusion has been key. Pippa is about to leave mainstream secondary school after a fantastic five years where she has loved going to school every single day. Inclusion at school has meant differentiating work for Pippa; running extra courses alongside the standard curriculum to allow her to leave with a qualification in every subject she has taken; Teaching Assistants accompanying Pippa on school trips even outside of school hours; allowing Pippa’s mum to come in to school to help with a drama production so Pippa could take part; working in a partnership between home and school to ensure Pippa has the best experience; teaching Pippa using a variety of ways, finding new interventions not tried before and thinking beyond to usual teaching methods; adapting the school uniform so that Pippa can wear a comfy version that suits her sensory profile – the list goes on. We have been very lucky to have such a wonderful school on our doorstep with such caring staff.
Finally, there is the importance of inclusion in the real world – people and places that don’t know Pippa personally but when approached, are willing to go the extra mile to help her access things alongside her peers and siblings. I’m never sure if these people or establishments realise the huge impact they have on families like ours, but it cannot be overstated. Over the years there have been so many examples of this that I can’t mention them all, but examples include our local high ropes course who put on an extra one-to-one instructor (free of charge) to help Pippa complete not only the low ropes, but the high ropes too when she visited with Guides. Restaurants that allow us to bring Pippa’s own food in when there is nothing she can eat on their menu due to her limited diet and fast-food places that will heat a ready meal for us so the rest of the family can enjoy a burger. Theme parks that offer the queue assist facility that allow our family to enjoy days out together: without the queue assist, Pippa would not be able to access the ride with her siblings and we wouldn’t be able to visit these places and have the same trips that other families have. Our hairdresser who kindly cut Pippa’s hair at the strangest angles so that Pippa could watch and play on her iPad to keep her calm (this was when Pippa was younger – now she is used to it she LOVES the hairdressers!). The Princess at Disneyland Paris who knew some basic signing and was able to sign with Pippa on our first visit – this made for a very emotional moment and a cherished memory. The crazy golf course who offered Pippa an extra nine holes as she was only just getting the hang of it after the first round. The water sports centre who paused a session and suggested that Pippa and her sister go in a tandem kayak even though that wasn’t what we had booked in for when they could see that Pippa was finding a solo kayak difficult. The list goes on……
Of course, there are times when inclusion has been lacking – peers that haven’t invited Pippa to parties; times that we haven’t been invited to social gatherings as some people found Pippa hard to be around; one teacher who wouldn’t make any allowance for Pippa’s sensory needs. Thankfully though, in our experience, these have very much been in the minority. However, the message I would like to send from this is the inclusion makes a HUGE difference, not only to the person with a disability but to their siblings and families too. Making allowances and adaptations can be very easy, especially if you are willing to work with the family and your kindness in doing so will be remembered long after the event has passed.