I originally started this blog to share my son journey as a SWAN (Syndrome without a Name) & I now include his younger sister who was born profoundly deaf so has her own journey too..,occasionally I will mention my older 2 kids who have no issues, it is just a place where I can get my feelings/thoughts out of my head & also to raise awareness...
A little insight
My eldest son, Leo , loves entering competitions in the hope that one day he will win something!! He was sitting next to me when I was on the computer the other day and saw a competition asking for a short story or poem about experience of being around someone with a disability and asked if he could enter ...I was surprised as he doesn't like writing and normally tries to make up many excuses to get out of it but I was pleased he took an interest so told him if he wanted to he could. Nothing more was said...a few days later Leo asked me to read something on the computer and check his spelling! This was what I read...
A STORY ABOUT MY DISABLED FAMILY
I live with my family who are disabled except for me and my middle brother Lucas. My wee brother is called Reuben and he has special needs because he has something wrong with his development.
It is hard having a disabled brother because he can be annoying sometimes and cries or screams a lot. Sometimes when I want to play with him he always pushes me away and starts crying. This hurts me as makes me feel sad. But when he lets me play with him I like it as he is very cheeky, silly, noisy, laughs a lot. But he gets very tired a lot so needs to rest.
My Mum and Dad are also disabled as they are both deaf. It can be very hard because I have to move my lips a lot for them to lip-read me and remember to face them when talking or I have to sign to them. I also sign to my wee brother. I shout to get their attention but sometimes they don’t hear which make me annoyed as I have to get up and tap them. My mum now has a hearing dog called Pepper and since she came to live with us I am so happy as she makes our lives easier. If I want mum’s attention I just call Pepper and ask her to call mum and Pepper will go and touch her to bring her to me. Its quite good as it saves me walking downstairs!
I do sometimes wish I had a normal family like my friends but its ok as I love my family as they are all funny, crazy and I love them.
By Leo Jolly age 9
This is the most he has ever written as like I said before he really dislikes writing , much preferring to draw! Leo finds it really hard to talk about his feelings, tending to bottle it all up until it just becomes too much...Leo & Lucas are what they call CODA - child of deaf adults and there was recently a clip on cbbc about a child explaining what it was like to live in a deaf family and it made me realise how different Leo family life must seem compared to his friends...We try and not to depend on him to communicate for us as it just puts too much pressure on him, but sometimes I do ask him to interprete for me depending on the situation and at first he hated it but is now gradually becoming happier to help out. We relied on him a lot , probably more than we should have but since getting my hearing dog Pepper it has eased some of the pressure off Leo as he knows Pepper will let me know about alarms etc Many people are surprised when I say that he refuses to sign...As a baby his first language was sign language before speech and then when he went to nursery and school he stopped signing. There are times when he gets really frustrated when we don't understand what he is trying to say which has caused issues...but since Roo came along and we are using sign language as well to try and get him to communicate Leo is starting to take an interest in learning it all over again. Unfortunately he has endured bullying at school last year when his friends realised that he had a disabled brother as well as having deaf parents...luckily the school brought in a social worker who was fantastic with Leo and did some 1 -1 with him to talk about certain issues and he gradually became more happier, confident, and talkative. He is currently on the waiting list to join Young Carers which I think will be great for him to be with other children who are like him and he can get some "time out" from having to help around the house and looking after Roo.