Hi all how are you today ?
Today’s a slightly harder day for me it is the birthday of my daughter Amy who passed away, she would have been 23 today, and although I have deblt with the grief of losing her and want to celebrate her short life, it is still kind of hard, questions pop in your head what would she look like now , what would her personality be like, would we have started our autism journey sooner. What job would she have liked.
I normally go to cemetery to visit and lay flowers this year though I just can’t face it, I am staying as quite and calm as I can.
My mum’s still in hospital and awaiting results, the doctors bedside maner today left her in tears, I told her to put in a complaint about it there is no reason for someone to be so rude to someone who is very ill, sensitivity at a time is needed most for some patients it won’t help her to shame or embarres her without concidering the whole picture.
What do hospitals need to do concider a person’s emotional and mental well-being when speaking and the impact the delivery of Thier words can have an adverse affect on them.
They talked her about weight and eating better but can’t give her food which is right for her needs as a diabetic. Get up and walk easy for them to say they don’t have crippling arthritis.
Let’s not even talk about those patients that have had to take steroids most of Thier lives due to asthma.
Complex cases need the most sensitive doctors and teams because of the affect long term conditions have of emotions.
Sorry if it sounds a bit moany but that’s my mum and she was very upset.
Maybe I just don’t have tolarance for rudeness, our families journeys through the years have seen some good quality care but also some seriously bad quality car that has has devasting life changing affects.
Now on to a much more positive subject
Our Niki had the last lot of dental work done injections and fillings redone Yes fillings teeth have been a bit of an issue due to Panic attacks for years but again no sedation, she did fine the deep clean a bit uncomfortable but she layed still let them do it, her pour little legs shaking. So yes she has come a long way.
I had a phone call from the school the first one in a very long time for a split second as soon as I saw it was them on phone a wash of oh dear flashed .
But I was taken by surprise to get a very positive phone call from Jake’s
Catering teacher saying how proud she was of him he got a merit for his work , what a delight hard working polite boy he is and that he is a pleasure to teach. 😀😀😀😀
We had a quick chat and talked about the very positive impact this course is having on his eating and thoughts about food and wanting to get over his eating issues. ❤️ It is all him this change.
Today was also a work with Hayley day she choose to work on her memory book we selected photos we have taken over the last six months from her saving money, learning about charities. Getting certificates
Then we got them printed and put them in her book.
I took her and Niki out for lunch and shopping for things she needed.
This afternoon after work Niki had her blood pressure check and chat about how the new meds are working. Before picking up her new meds from chemist.
On to Book this is still hard to do at the moment but getting Thier I now have InDesign so can add final things
My self publisher name mostly but
I have been really thinking alot lately about adding in the infinity autism sign.
For many reasons a) because I want it to be inclusive to all autistic people and having got to know many this sign is so much more relivant in this time.
While Emo will still have his jigsaw on front cover because my daughter designed it back in 2016 when book was done, we have now learned so much more from adult autistic people and Thier voice says they prefer the infinity sign. My kids are going to be autistic adults and at sometime I. The future they may also prefer it.
But I also don’t want to excluded all those families that still use it or see things differently 2 .
I am Thinking of adding it on the last page to show how we have progressed In Our learning as an autisic family.
I have also just ordered a card reader so I can take card payments at book events to. I take this book things very seriously and want it to develope into a lasting business, I case my kids ever need a job later In life a protection of Thier future. They have been working with me on this book form the beguininng.
Much love Faye XX
Happy 23rd birthday Amy born 26 June 1996 at 1.54am 1lb 12oz
Only alive in the world 25 mins
Always loved never forgotten ❤️❤️👼