Jess describes Bella as ‘a bossy sass pot’ who ‘only ever lives in the moment’. For a 6-year-old, she’s something of maverick; taking on each day as it comes, never caught up in the ‘what’, ‘when’ and ‘why’, but always certain that when the weekend comes, she’ll either by out dancing or up the stables grooming horses.
Bella’s mum, Jess, is an advocate for raising awareness for Down Syndrome and has been sharing her and Bella’s journey on social media for a number of years. Together they have connected with over 13,000 followers, creating a community where everyone can take a peek at some of the wonders of Bella. Their slogan prominently featuring at the top of their page to show true pride in what they have achieved together: ‘Everyone needs someone with Down syndrome in their life”.
Positive awareness for Down syndrome is something that is only really now bursting through into mainstream media. When there are so many positive things to be said it makes you wonder, why aren’t more people shouting about them? The reality is, it takes an awful lot of vulnerability to share your thoughts and experiences of a condition that so many take prejudice against. Fortunately, Jess (and also Bella!) have been ardently telling their story from the very beginning.
Bella was the first baby to be born with Down syndrome in Derby in 2017. Jess was only 12 weeks pregnant when she discovered it was a possibility that Bella would be born with Down syndrome.
“They do a standard blood test on everybody”, Jess said. “And we had a hormone that was showing ‘high risk’. That’s the wording they use, ‘high risk for Down syndrome’. Then they talked us through the options”.
“I cried… For about three days. When we found out we were given a booklet from the Down Syndrome Association. I didn’t even look at it. I think I spent the whole pregnancy in denial, thinking she’ll be fine. She’ll be fine. And, she was fine, but she did have Down syndrome.
But I think it’s the negative perceptions, isn’t it? It’s all negative. Like I didn’t need to be upset because she had Down syndrome. I was just afraid of the unknown. And now I know, I’m no longer afraid”.
The fear of the unknown is what inspired Jess to start their Instagram page; to show people ‘that she’s a typical little girl that does the things any other little girl loves to do’.
Currently, Bella attends mainstream school and has access to a support teacher during school hours as according to her EHCP (Education Health and Care Plan). Although Bella has only been in school for a couple of years, Jess has already been advised by an independent SEN advocate to start looking at secondary schools within the next year. The very thought of this transition has been enough to make Jess ‘want to cry’.
“I don’t know what will be best for her, because she thrives in mainstream”, Jess said. “She learns so much from others. Her speech for example, it’s really come on so well in the current setting. I don’t want to put her in a new environment that could jeopardise her progress, or somewhere she might pick up unhelpful behaviours”.
Unfortunately, gaining the right support for someone was Down syndrome in education is not getting any easier. However, more people are beginning to understand what kind of things actually need to be put in place to provide the best possible assistance. This includes things like speech and language therapy, occupational therapy, access to specialist equipment – all of which can be writing into an EHCP so that the funding is provided! Jess revealed in all honesty, that she wasn’t aware of what support could be fully funded until she spoke with a SEN Advocate.
Sibling relationships, especially sibling relationships within send families, are something we don’t speak about anywhere nearly enough. Trying to manage different needs within the family often feels like the hill we’re going to die on. In addition to this, for siblings themselves it can feel incredibly unfair or unjust when someone else appears to get more attention than them or are allowed to follow different rules.
Bella has a big brother just 13 months older than her. According to Jess, they are the best of friends. She said, “it was difficult to start with when she was born because he was only 13 months old. And she was quite difficult as a baby, she had acid reflux, she would just scream and scream. But as they got bigger, they just bonded. They are still really close to this day”.
Unlike a “typical 7-year-old”, Bella’s brother is somewhat of a self-taught expert in Down syndrome. After looking through his YouTube history, Jess discovered he’d been researching into the topic for some time. When asked about it, he said “I wanted to learn more about Down syndrome, and I didn’t want to ask you anything because I want to learn things for myself”. Truly, Bella’s brother is a role model for us all! If only we all had the compassion and compulsion to take personal responsibility to educate ourselves in such a selfless way.
If we were all honest with ourselves, at some point we’ve probably felt prejudice towards those with Down syndrome. This isn’t surprising considering the way the condition is often portrayed in the media. Some countries, for example Iceland, have almost completely erased Down syndrome from their population. As Jess said, the unknown is scary. We often pass judgement on the things we don’t understand, which is why it’s so important we take responsibility and educate ourselves.
