Hi all how’s your day been today,
I have been working with Hayley today, and prader Willi syndrome is what Hayley has aswell as Epilepsy.
My work with Hayley involves many different aspects from helping her access and supporting her medical needs, like appointments and medicines as well as everyday life skills, socialising , and meetings with the many different people who support her, I started working with her when my Jake was six months old.
Before I was a shop assistant but the in direction was great for her and for me as a mum of three, it gave me the flexibility to work to help support my kids and share the responsibility providing for them with my husband.
Over time my work has with her has changed depending on her needs. I am a very firm believer that being a care worker for her I have a big responsibility of adapting to all her needs whether that be physical ,Mental, or Emotional.
Three things that are important to me that I meet them, that she is treated with the dignity and respect she disserves. But I always like to challenge her more, push the boundry’s of what was expected of her, she certainly has a strong will a willingness to learn and is getting better with change to routines,
She is now starting to try new foods fruit and vegetables, she loves being involved with Emo and the book and it makes her feel happy to be included all the way through the book. She said she was really proud of me and that it’s my book and that no one can ever take the hard work I put into it away.
She is a great friend to have loyal caring funny and a little annoying some times but that is just part of her truly remarkable personality.she loves to talk to people .
She is starting to want to do more and more new things.
She has come more and more out of her shell lately even though she has always been outspoken and really lets you know if she doesn’t like something, The one thing that amazes me is that she can recite word for word what others have said or what she heard, I mean a whole days conversation leads for very Interesting conversation. I learn alot about those who work with her in the day center some very funny things to which maybe private to the person having the conversation In Hayley’s company or even if they are not close to her when she is talking, I think she has super sonic hearing sometimes.
That was work today .
Jake had a good day at school he was a little confused because he was because yesterday they told him he would be doing this new project and that it would be in first lesson. He turned up but the person running it wasn’t there so they told him to go to the lesson he would of have an wait, it was p.e he waited and know came so he was confused by it.
He is still having feelings of emptiness and feeling sad but still doesn’t know why, depression doesn’t always have a reason it is just a feeling. He also has had a Migriane for the last three days and a little syncope .
Niki has had a good day at college , this child care course she is on is really helping her learn and talk and share more with me. I feel a even deeper closeness now then ever before. With Niki she is learning others perspectives an important part of life who ever we are.
Heather Goulding another author who I talk to as a fellow author and another mother of a young autistic adult. Is kindly sending me a copy of her book to read, and she kindly accepted a copy of mine to read,
I asked if she would mind reading my book and then only indorse me if she likes my work and book. This is important to me as a new author because I want to be judge on my writing and book and not on whether they like me as a person, if that makes sense