Tes SEND Show 2024
Join us on the 11 & 12 October 2024 for the Tes SEND Show 2024. Returning to the award-winning Business Design Centre.
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Welcome to my space! My name is Luis and I'm excited to have you here. Please explore and make yourself at home.
My family and I would like to share this space with others. On this journey we will be providing valuable information and building a community for families with disabilities. Join us as we meet amazing people who share their stories. Our goal is to encourage you to join us in creating a space where we can continually help each other.
I am Luis, who lives at home with my parents, older sister and younger brother. I love to attend my school that helps me, as I have been diagnosed with a rare illness called Nascimento X linked disease.
Who am I? I am Eva, Luis’ older sister and I am roughly around 10 and a half years old at the time of writing this. How many siblings do I have? I have 2 siblings, they are both boys who are younger than me, sadly I do not have any girl siblings lol. One is called Luis of course and my other is called Antonio. Luis is 6 years old and Antonio is 2 years old.
What things do Luis and I like to do? Luis and I like to play different things like hide and seek, tickling and you can’t catch me. We also like to throw a ball to each other, although he cannot catch it I slowly roll it to him. He normally takes his time to throw or roll it back but he enjoys doing it. Luis and I play dinosaurs on the bed, blow on his belly as the silly noises are funny and make us laugh. When we are outside we like to go one the slide and the swing in the park, blowing bubbles and one of our favourite things is going to the swimming pool with water slides. I am a very good swimmer so I enjoy looking after him, and Luis is also swimming in school so he is quite good. He also likes to ride on my back around the pool. When we were younger we used to read books in our tent, now we usually just read on the sofa. Sometimes I help Luis to have a shower or feed him.
Luis has had an eventful childhood so far from seizures to surgeries. Below are some of the events that have happened so far but not all just to give a background on the effects of his rare illness but also some successes.
Luis has been lucky to have a SEN school in Scotland and also now that we moved to Cambridge. It was not easy as the waiting times and process to get an EHCP in place is not always as straightforward as it may seem. There was also an what seemed to be an easier route of putting Luis in a mainstream school and have additional support.
What is challenging in the house? It’s hard to share the tv as Luis uses the tv most of the time to watch one show duck tv, so we need to use computers, tablets even phones! We need to change the tv or tablet for him most of the time as he cannot do it for himself. It’s hard to eat normally at the table if we sit next to each other because he always pinches me or tries to grab my food if he like it. He'll hit us if we pass to close to him or sit in his favourite part of the couch where he stays on his knees and bounces to his tv shows. Sometimes if I try and help him with the tablet he will hit me because he thinks ill disturb him T_T.
The vision with our store is to take some of the proceeds and invest in taking the incredible siblings of our children with additional needs, on trips and events to enjoy some time with other children in similar positions. We would also like to donate to two chosen schools at present Kelbourne Park and Castle school, with a vision of expanding our donations in the future.
It is quite interesting what we hear everyday when speaking to each other as parents, carers, teachers and friends of those who need us most. I shared a handful above, click on this link and share some inspiring, funny or interesting one with us.
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