To mark Learning Disability Week this year we caught up with Joanna and her daughter Sophia, who we last heard from in 2021, to find out how the family are getting on almost nine years after Sophia contracted meningitis as a baby
Sophia has global developmental delays, severe learning disability and severe speech delay but, as Joanna says, this does not define Sophia.
How is Sophia getting on? How old is she now?
“Sophia is eight, almost nine years old and is just finishing her primary four year in school. She is a busy girl who is a member of the Girls Brigade. She also does athletics through special Olympics.
In 2021 Sophia was given a ‘talker’ (communication device) through Meningitis Now’s Rebuilding Futures Fund.
Does Sophia use the ‘talker’ now? Are there any other tools she uses to communicate?
“Sophia continues to use her 'talker', it is particularly useful when she is with people who don't know her, or with friends her own age as it allows her to communicate with them in a way that is easy for them to understand - this also works well for her if she is requesting drinks or food in a cafe or restaurant, or if she wants to ask to go somewhere specific that we don't know a sign for.
“Sophia used her talker in a school assembly recently to tell everyone about how Meningitis Now has helped our family - her school also held a fundraiser. Sophia uses makaton signs, alongside some of her own adapted signs, and is now using some verbal communication too - a mixture of everything gives her much more opportunity to be heard by those around her!
“Another way Sophia communicates is through stories we had made into small books that we call her ‘social stories’. ' They are particularly helpful when joining groups or meeting new people like school staff or medical professionals. She uses 'Sophia’s Story' which explains her experience of meningitis and the impact. There are social stories around sickness, emotions, and being a flower girl at a wedding that have all supported Sophia in understanding the world around her and helped her share her feelings with others.
What have been your proudest moments with Sophia over the last couple of years?
“Oh my goodness, so much! I am that parent that literally is buzzing at so much that she does - a wonderful side effect of our traumatic experience is that I truly find the joy in her daily activities and her development, it's wonderful to see someone overcome barriers each day and to do so with such enthusiasm!
“Four years ago Sophia became a big sister and she is such a wonderful big sister to Reuben. Despite them both being similar in size and developmentally Sophia makes her role as a big sister very clear - she mothers him, she seeks out his favourite toys in shops, she loves hearing about his day and asks him daily did he do good listening at nursery! She has story books on her ‘talker’ which she uses to 'read' Reuben bedtime stories.
“When Sophia moved schools a couple of years ago she left her friends and was so brave in making this transition. Also, Sophia being a part of GB Tigers and Gymnastics makes me so proud - she loves these clubs but they are also a challenge at times, and yet she gives her all every week.
“Watching Sophia sharing her story with her 'neurotypical' friends was so emotional, she makes it clear that she wants to be understood, that she wants to be seen as an eight year old and as independent from her disabilities. Sophia is a good friend to others, she cares so deeply, and just wants everyone to have fun and be happy.
“When Sophia used her new scooter for the first time it was a challenge in terms of physical and mental processing. It took years of trying but she got there and it is lovely to watch. Sophia is always trying. She never gives up.
“Her progress with speech and communication is probably what makes me proudest, not because of what she can do, but of how she does it - Sophia is now so confident in her own self and her own opinions, and it has been amazing to hear her say, "No" to me and to ask me, "Why?" - I don't love this on a day-to-day basis, but I truly do love that she has kept doing things her way in her own time and values her own self along the way!
What are the challenges you face as a family and how do you overcome them?
“Challenges we have faced as a family have been varied - initially it was gaining access to appropriate health and social care services, and appropriate education. Meningitis left Sophia with disabilities that don't fit into any ‘box’ - she has physical disabilities as an affect of her extremely slow growth, her muscle development and her motor skills, and learning disabilities that are emphasised by her severe communication difficulties.
“For many years she was tested for a number of other things before medics agreed that this was all an impact of meningitis. None of it fits nicely into a referral form, and therefore we had to do significant research, book private therapies and simply say, “No” when we knew something wasn't in her best interests. Sophia has had wonderful experiences entering the education system and has made friends along the way, however this came with a lot of moving and a lot of upheaval.
“Currently it's Sophia’s desire to fit in and have friends. Social opportunities are so limited for children with learning disabilities, and even less so are the opportunities for her to safely attend social clubs and schemes with a mixture of abilities. She has friends who are neurodiverse and neurotypical - the only time they all are able to be together is if it's organised by parents. At nearly nine years old Sophia does not want her mum at her side all of the time, yet she doesn't have many options!
What are the misconceptions about Sophia that you come up against most frequently? Are there any myths you'd like to dispel about people with learning disabilities?
“Due to Sophia’s size and abilities, many people assume that she is much younger than she is and tend to treat her as such, often talking to us rather than to her. However, she soon lets them know who is boss!
“Sophia is a very social person, she loves to communicate, to share stories and finds joy in spending time with others. A common misconception that we have faced from others, including professionals, is that because she is nonverbal, she isn't social and that she doesn't have a contribution to make. Sophia’s ‘talker’ has given her a voice that cannot be ignored, and she knows how to use it effectively!
“Like any other eight-year-old Sophia experiences a multitude of emotions - it has been assumed before that Sophia wouldn't understand certain complex emotions, such as grief, loss, friendship, anxiety - we have significant evidence that not only does she experience these things but given the right tools she is also able to process and make sense of them. It has been assumed that her behaviours whilst expressing emotions are simply behaviours, rather than communications about how she feels.
“It has also been assumed that Sophia does not 'know any difference’ between her and her peers. Sophia has made it clear that she does - she knows she is different from many others her age and that her experience of the world is different too but giving her the words to express this allows her to embrace this difference.
How do you reflect upon Sophia's experience of having meningitis now?
As her parents we answer this question as polar opposites - Chris would say he doesn't reflect on it or think about it often, whereas I would say I regularly recognise the impact it has on her life - and on mine. I definitely reflect on it as a significant trauma to our family.
We will always be grateful for the medical team that responded to her, and that she recovered and is with us today - the most sparkly, colourful, fun-loving girl. The impact of meningitis has brought so many wonderful people into our lives, friends that we may never have known otherwise and now wouldn't be without. It changes how we view the world, and how we parent - planning the future is less important than living in the now, and that in itself is a freedom I don't want to lose.
What are Sophia's favourite things now?
Sophia loves to colour in and read books - all the books! Sophia loves pizza and ice cream, jumping on the trampoline, going to the play park, gymnastics, splashing in the swimming pool, and playing with barbies and dolls!
