Reuben C's quilt    (Quilt Completed)

Thank you

Just a message to say the biggest thank you every for Reuben’s special quilt! It's absolutely amazing. It's beautiful and so Reuben, all his favourite things all the time and effort all of you special people have put in to put smiles on all the children's faces and keep them cosy!!! This is the second quilt that we have received, we had one in 2018 that was for Reuben’s sister Darcee Ella who passed away in that April which is completely treasured. The spooky thing is is the message I received because of the finished quilt and confirming address was actually on the same date but 5 years later and we have some of the same stitchers on this one too!!! Thank you so much. Reuben has spent so long looking at all the pictures on it he absolutely loves monkeys and his favourite stories the Gruffalo and Mr Men! Cannot thank you all enough. He's had some rubbish hospital stays and this will keep him snug and happy there and every day too. Huge thank you and have a lovely weekend. Lots of love

Finished photos

Individual squares

Card

Stitched by: Anne Berg Gjolberg

Biography

Reuben is a lovely 12 year old boy who lives with his mum and many pets! No concerns during pregnancy and all went smoothly apart from mum having severe sickness and being hospitalised a lot which he was induced early for.

Reuben was always an unsettled baby, he needed deep pressure on him all the time and constantly to be moved around. He never slept for longer than 30 mins at a time and became really stressed when he woke up. Let’s say he loved to keep us all on our toes entertaining him!

Reuben’s development in terms of moving around was on time but his social and communication was very delayed. He didn’t smile, didn’t enjoy interaction with others, was very fixated and appeared to be in his own world. He never babbled or responded to his name. Just before he was two he woke up saying some object words ball, car and dog although these were not used in context. A few months later Reuben’s behaviour became erratic, he would spin round and round, not like any contact with others and his words and sounds disappeared. He received years of speech and language and his speech eventually came back. He was diagnosed with autism around the age of 5 although this was identified from a much younger age. He made progress at school although had difficulties with social communication and interaction.

Reuben from the age of 6 became more clumsy and started to lose skills. This was really slow at first and almost unnoticeable. They have intensified over time and he is now non-verbal, incontinent, non-mobile, has some tightening in his legs, can struggle to support his own head, repetitive hand movements and in his own little world. He can have episodes of zoning out where he is very tired afterwards. He is undergoing further testing genetically to try and find a cause. Reuben now has a gastrostomy as he has been assessed as having an unsafe swallow. He is currently on continuous feeding as he has lost weight a lot recently, possibly due to movements.

Reuben takes medication multiple times a day to help with movements. He still struggles with sleep and despite medication has a max of two hours broken sleep. He has recently been at a local special school and made relationships with some staff members which is lovely to see.

Reuben has daily physio to help with his movements. Reuben is working on object of reference for communication which will be amazing if we can get some communication back. He finds lots of things funny and will laugh along to himself especially over his dogs. Reuben needs full adult support and assistance, he requires equipment to help position him and needs an adult to do all self care etc.