Meet Becca and Elliot

I had a feeling throughout my pregnancy that something was wrong, but aside from being 10 days late and a massive 9lb 10oz at birth, nothing was identified. However, less than 12 hours after his birth, Elliot was diagnosed with polydactyly, right bundle branch block, a quadricuspid pulmonary valve, and ventricular septal defect. Mother’s instinct! From then on, Elliot’s first year was a blur of hospital appointments, weight loss, and scans. And then covid hit. Elliot was two during covid, and his delays were passed off as covid related. However, when restrictions were lifted and no changes to Elliot’s development occured, it became more obvious that something else was going on. Over the following three years Elliot was diagnosed as deaf, with fine motor skill delay, sensory processing disorder, social and emotional immaturity, speech delay, learning disability, autistic and ADHD tendencies and anxiety, all of which led to challenging behaviour but no formal diagnosis. He has no awareness of danger and is constantly on the go. He was referred to just about every specialist available and is currently managed by two different hospitals and a support worker. He wears hearing aids and apparently has subtle dysmorphic features. He’s completely gorgeous!

We have recently had full genome sequencing completed and are waiting for results. Although we fully know that even with this, we are more than likely never going to have a diagnosis. The thought of this is crazy and terrifying as no one can tell me what to expect, what his baseline will be or what his full potential will be like. I’ve had to change my job multiple times in an attempt to work around Elliot’s needs but without a diagnosis it’s hard to explain to others what I need! My career has now taken a back seat to Elliot’s needs.

We have an EHCP, gained at first attempt, to support him in school and endless TAF (Team Around the Family) meetings. Although we do not know what the future holds for Elliot, he is the happiest child and despite seeing the world differently to the rest of us, he is making his own way. It is terrifying not knowing what the future holds or what opportunities he will be able to access. Parents of ‘normal’ children tell me they feel the same but as their child develops, they will be able to choose what opportunities they have, Elliot may not have that choice and that is the scary part of being a mum to a SWAN. It’s also incredibly frustrating being told by well-meaning people that he doesn’t look different, or he’ll catch up or even if he’s doing really well, knowing that he’s actually cognitively two to three years behind. It can be a very isolating and lonely place but being a SWAN UK member has allowed me to find people who fully understand and don’t try to make things better. We just hold space for each other to feel the way we feel. I wouldn’t change Elliot for the world, but I would change the world for him.