We’re the Parkes! Mummy (Laura), Daddy (Steve)m big sister (Chloe) who is 12, and Charlie who is 10 and our very own Mr complex SWAN!
Charlie’s specialist subjects are WW2 and anything with wheels and an engine – the bigger the better! He has an absolutely wicked sense of humour and is a serious out of the box thinker!
From the beginning
Charlie’s issues started in pregnancy, we were told at our 20 week scan that he looked to have an abnormality in his brain and also excess fluid surrounding it. After further tests and more in depth scans we were warned at 30 weeks that there was a high chance he would struggle developmentally with things like walking and talking. I (mummy) was also very poorly during Charlies pregnancy with Hyperemesis Gravidarum (HG) and spent countless weeks in hospital on fluids and steroids.
Charlie has smashed every goal and expectation anyone has ever had about him, he has ripped up the medical textbook and rewritten his own like many of our SWANs. He has been through more tests, procedures and surgeries in his life than anyone should ever have to, but all with a cheeky smile and has made many people giggle along the way. Chloe too has taken everything in her stride, from helping with his medical cares to adapting to changes in routine at any given time when we’ve needed to rush to hospital, she is a great support her little bro and is a true super sibling!
Education
Charlie struggles with the world on a daily basis, due to anxiety, sensory processing issues and the need for decision and control to feel safe, but he continues to push himself to ‘fit in’ and do what his friends and peers are doing. He previously attended a mainstream school but at the end of the academic year in 2022 we made the decision to off-role from school and embark on our home education adventure for both him and his sister.
At School Charlie was an expert at masking his struggles in order to get through the day but it was then a very different story when he came home to his ‘safe place’, often exploding with all the emotions he had kept in all day with increasingly challenging and violent behaviours and becoming more volatile as he’s grown in strength and size.
We work really hard to help Charlie to regulate his emotions and to find constructive and safe ways to deal with his big feelings throughout the day and night to avoid them building up and exploding.
Since coming out of the school environment both children are thriving being able to learn at their own pace and we are able to tailor activities to their needs and interests etc. It certainly hasn’t been a magic fix for big and volatile emotions that come with Charlie’s struggles but things are definitely different.
Early years
He spent the vast majority of the first 2 years of his life in hospital about an hour away from home, which was a huge strain on all of us as a family. We’ve travelled all over the country to see various specialists and get second opinions and multiple appointments/therapies a week are not uncommon. Although as he’s grown he has become stronger and more robust along with us becoming much more knowledgeable and confident in dealing with his medical/health issues which thankfully leading to less emergency hospital admissions, he does still get poorly a lot more than other children.
He spent almost 18 months at home shielding during the Covid pandemic lockdowns due to being identified as ‘clinically extremely vulnerable’ which was tough to say the least.
Ongoing
Over the last 10 years We’ve had to battle and fight for everything, every service, every bit of extra support and equipment. Not having a diagnosis very often means you don’t tick boxes, and not ticking boxes means it isn’t straightforward for funding et . It’s not easy, in fact it’s exhausting… and oh boy, there is soooo much paperwork!!!
We’ve learnt to laugh rather than cry and appreciate the smallest things and that actually it’s OK to do things our way that works for us as a family. We’ve lost family and friends, I’m sure of it, and have been accused of making up Charlie’s problems because we don’t have a diagnosis people can just google.
This has undoubtedly lead to struggles with my mental health as a result. I have been accused of ‘it all being in my head’, ‘lying’, ‘making it up’ and even actually making Charlie ill for the attention!
We are so very proud of both Charlie and Chloe in the way they cope with what is our ‘normal’. I’m 100% sure that Chloe at 12 knows more about Charlie’s medical conditions than some professionals.
SWAN UK
SWAN UK means we are not alone, we don’t have to fight the battles that come with having a ‘complex’ child without a diagnosis on our own. There is always someone at the end of a phone, email or message to give advice or even just an ear. I see SWAN as backup – ‘what do you mean he doesn’t have a diagnosis?’ queue me directing them to the SWAN UK website and a brief explanation of rare syndromes without a name.
Having an undiagnosed condition has made us stronger as a family and is taking us on a journey we’d never expected. We’ve met people, made friends with other wonderful families and experienced things we may never had got the chance too thanks to SWAN UK.
A diagnosis would make things eeasier when explaining ‘Charlie’ and I feel people wouldn’t question it, they could google or research and the answers would be there in black and white.
Paperwork and forms would be a lot quicker easier and quicker to fill out with a named condition/diagnosis rather than a page of ‘this is Charlie’.
As Charlie has got older he has developed more understanding and awareness of some of his struggles and differences which, of course, comes with questions, having a definitive reason in the form of a diagnosis, even if it’s super rare and only numbers and letters without a name yet I think it’s important for his and other SWANS sense of self and understanding of who they are.
We’ll Continue doing what works best for us as a family and face whatever the future throws at us.
