Today Persephone received her beautiful Love Quilt and was blown away. She has carried it around this afternoon and then actually *wait for it* made her bed!
I would like to say a huge thank you to all of the lovely stitchers, the quilter and the card maker for all of your hard work and of course the ladies at HQ. I have seen so many photos of quilts in photos, but they really are something else in real life! Also, the sneaky glow in the dark unicorn square from Seren and Kay's special glowing moon made her literally squeal with delight ðŸ˜„
While Persephone has Tourette Syndrome, she also has an anxiety disorder and sleep issues. She has already said that this quilt will keep her safe and help her dream of unicorns. As a Mummy, this makes me so very grateful to you all.
When Persephone reached the age of 6 or 7 we noticed that she had began to repeatedly twitch her nose, blink excessively and constantly clear her throat or sniff. She wouldn't do everything all of the time however, it seemed to go in cycles of one or two at a time. She was showing classic signs of Tourette Syndrome (TS), which we were very familiar with as her Daddy also has TS.
TS cannot be cured and while there are medications that can be prescribed for this condition, we were not keen to explore this route. For this reason it was not necessary for us to obtain an official diagnosis until Persephone was due to attend Junior School. The diagnosis enables us to explain to others that Sephie is not rolling her eyes in exasperation, she cannot help it as it is a tic. She may not be nodding her head in agreement, she is experiencing a head/neck tic. She is not laughing at you, she has the urge to shout "ha".
Persephone finds it tricky to sit still at times; not all the time, just sometimes. As she finds it deeply embarrassing to be the centre of attention due to her TS she has to sit at the front of the class so she can focus on the lesson, rather than keeping quiet. When there is a test or exam she is allowed to sit in a room alone so she can tic without the fear of upsetting or disturbing others.
Suppressing a tic can be devastating and the shear effort required to even try and do this is immense and mentally and physically tiring. Despite this Sephie often tics more at home where she is in her own environment and feels most comfortable, but this doesn't make the condition any less distressing at times.
Sadly TS is a condition that rarely comes alone and is linked to many other various conditions. For Persephone this is anxiety and for someone who is just 10 years old she has far too many worries. Thankfully she receives regular counselling for this and has recently had sleep therapy for anxiety related to becoming tired and having to sleep.
TS does not own Sephie though and she is a very confident young girl who enjoys every aspect of a childs life. She takes great pleasure in drawing and particularly likes Manga and Kawaii styles. She also is a keen gymnast and is doing very well at this. She likes to highlight her condition too in order to raise awareness of what its like to live with TS. Her video on YouTube has received many hits and it makes her feel famous! You can see this here: