#author #emotions #christmasbook #family #bookevent #bookreview #Ehcp #autism #anxiety #birthday #mentalhealth
Our Hayley so hard to believe she had her 48th birthday this weekend.
The thing is Hayley has prader Willi syndrome and epilepsy Thier was a time when she was first born when doctor thought she would never walk talk or do anything. They said to my mum she should put her in a home and forget about her she would be a cabbage. Wow hard to believe the attitudes of life then. We have come a long way in society since then but still progress and awareness still is a thing parents of special needs kids have to fight for, we still live in a world where even though progress has been made there is still so much to learn.
For a start hope , love , acceptance and support plays a very true roll in the lives of our special family members.
If my mum had listened to those words back then she may never of been able too.
She does have a lot of learning difficulties she still has to have lots of support and help, but she proved them wrong she walks , she doesn’t stop talking sometimes she wants too learn, she had a boyfriend for well over 25 years. She is very social but if she likes you, you know your her friend. She is giving and caring loves her family and is super protective of those she loves. That’s our Hayley. She likes the last word on everything, has a tendency to put her hand in your face if you mess with her ridged routines.
Here she is celebrating her birthday.
She has been wanting a big Elf for her birthday, so she got it 😂😂
I will add videos to library 😀
This is fast approaching in fact 4 days to go, exciting, I can’t wait. Getting to take my book out again to show it off. That’s a blessing. Everything is prepared and ready to go. So not much to think about other then turning up on the day. It will be nice to be able to share it on here after event.
So next thing I would like to share is of another book not mine this time but one I have really enjoyed reading.
I was very intrigued by the story line of this book and it made me laugh out loud in places, but also this deep insight into the three main characters.
Grandmother, daughter in-law and grandchild. A very sensitively written story line with topics that fit today’s society well, the thoughts that went into the sensitive subjects it talks about and how they affect each one of the three women’s lives. Sexuality, suicide loss of a husband,father and son. Divorce and new relationships. This book has it all. Thier is even a bit where one has a disability that is hidden. This is a book that I would definatley would give a five star review I don’t think there is anything I would change or edit about this book. You can tell the author thought deeply about each character in the book. I would love to go into more detail but don’t want to spoil it for those that have not read it yet. It also brings up the topic of online bullying, and how it is taken seriously and handled by adults and with the school. Well done to the author and everyone envoled with this book.
It was actually great too be on the readers side of a book. And bury myself in the story.
Jake’s Ehcp meeting
Today was Jake’s Ehcp annual review this time dad came too, it was great having him Thier with me on this one.
HE EVEN SHAVED HIS BEARD OFF 😱😱😍😍😍
I get to see the face of the man I married underneath the beard 😀 not that I didn’t like his beard but I like his face.
Being able to have both our input into Jake’s plan at the most important stage of his education is a massive thing from a parents perspective.
Jake having added what he thinks at school the other day when he filled in his form at school. I don’t think we put anything he hadn’t mentioned himself into it.
Jake choose not too attend today, I know the reason for that is my hubby came this time before he before he came to support me and make sure people spoke to his mum nice . That’s Jake thinking about others before himself , it was great he gets to choose if he comes to these meetings or not. Because he needs to know he has the right to have input into a plan that is based around his needs, and his perspective.
We focused on maintianing his plan, changing some of the things that are no longer relieve to where he is right now, adding what needs to be in place in his goals for the future plus his exam plans and what provisions are in place.and will need to be added for the run up to Gcse’s we discussed, issues he has in teacher understanding of Jake and his needs, which classes he felt he was most affected by noise. How Jake takes time to gather himself and that he comes back real focused. It was definatley 💯 more positive meeting, the goals in Thier are not just for Jake but the school to set goals they need to achieve in Thier support of Jake, a time to reflect on how they take the way Jake communicates and adpat just the way they say things to him and his perticular mindset and understanding the literal thinking being a big thing I think they are beginning to understand at school.
We talked about relationships and friendships that are slowly beginning to develope with his peers both in and out of school.
The form we got just didn’t give enough space to put everything we discussed in the parent section.
So a fab one really, we now wait for it to be written upand see a copy before it is sent for updating with county.
Jake helped cook dinner tonight I was teaching him to make Pastitso a Greek dish, he made the salade too it was lovely.
We all set at the table together
Now while Jake made it he was telling me what smells he liked the garlic being one of them. He may not of eaten it himself but today he ate something new he asked me to get him something new to try, he ate a whole piece of Chicken strip in bread crumbs it wasn’t a small peice.
That first tiny bite, you could of heard a pin drop all waiting quitely while he finnished that first bite. Will he SPIT it out was there was this breath holding moment, we don’t normally get passed the look or smell of other foods but his time one bite became another, then another til the whole price was gone. He felt proud , we felt proud. This is huge for him!!
Well that’s it for tonight.
Much love Faye xx