Sensory issues with clothes

I have recently made a video of me talking about sensory issues I have with clothes. There is one other sensory issue I have but it isn't to do with having Asperger's. It is to do with the scar I have from my heart surgery. Most of my clothes have pictures printed on them and not sewn so they don't have any backing. I do have a couple of nighties though that do. When I wore them last year during the hot weather, the backing on them did rub against my scar and make it itch. I had never had this problem before but now I do. I think I will be giving those nighties to a charity shop now that I can't wear them any longer.

To find out about my other sensory issues, check out my YouTube channel at https://www.youtube.com/channel/UCvh3FOnxCAiITh1cosZM_Lg

To find out more about me growing up with Asperger's, why not check out the Autism Parenting Magazine. I have had articles in it this year; January and this month. You can find the magazine here https://members.autismparentingmagazine.com/dap/a/?a=55311&p=AutismParentingMagazine.com/how_to_purchase

Is autism genetic? My view.

 

Yes, that is me when I first started secondary school back in the early 80s. Oh my. 

So, I know there has been some debate whether autism is genetic and runs in families. My view? Yes, it is and does. I know of lots of adults who are autistic and have autistic children. I know of adults who were diagnosed after their children were diagnosed with autism; the most known one in recent years being Christine McGuiness. I have Asperger's (yes, I know that's not on the spectrum anymore but it was what I was diagnosed with and I keep that), so did I get autism from a family member? The answer is - I believe from my dad. My dad died in 2019 but it was never mentioned to him and we didn't know. He had other major health issues to contend with over the years he lived but there were clues there that he was autistic. It was only when I was diagnosed in 2011 and was asked by the psychologists if I had a family member who also had Asperger's that we said my dad. 

So what clues were there that he was autistic? Well, the two that come to mind are calling out across the room to others, and he didn't keep eye contact with my mum when she spoke to him (this was when he was in hospital one time). Those are the two things that came to mind when we were asked.

So, do you believe that autism is genetic? Let me know.

Want to find out what Asperger's means to me?

 Would you like to know of another way you can find out about me and Asperger's/autism? As well as my website and my children's autism books, there is my YouTube channel. I started it ten years ago, talking about how I found out and was diagnosed with Asperger's, then I got back into writing again and never returned to it. Until this last week. I am creating more short videos of me talking about having Asperger's and what it does and doesn't mean for me. If you would like to learn more about autism and me, then why not pop over there. My latest talk is found here 

https://www.youtube.com/watch?v=8TfzTcTWTo4&t=5s

Please let me know somehow if you like it or not. I plan to do more about what it is and isn't for me, especially now I know how to record and upload it to the channel. 

If you know of anyone or organisation who might be interested about these, please let them know as I am working on workshops to help SEND children and their families using story ideas from my books.

Me and lying

 I mentioned that there are some lies I can say. Here are two. If someone (scammer) phones and says ‘about your computer’, I will say I don’t have a computer. If you wore something that looked horrible on you and you were a friend, I would say ‘mmm’. I wouldn’t want to upset you. I hate confrontation.

Yesterday I talked about lies that I can tell. Today I will mention ones I can't. I call them big lies eg if someone asks me to lie that I was with them when I wasn't, I just can't. I might try but it doesn't come out right and you are able to tell that I am lying. So if I say I was somewhere, I was there.

I will give you an example of what I mean about the latter. This happened years ago when I was working at Guy's campus. In the early days of my job in student services I would get given the task of going to the other campus (it was Guy's and St Thomas's) and set up exams for the students. On this one time I had set it up and had to wait for the invigilator to arrive. I needed to go to the toilet, so I did. While I was in there, I heard banging on the outside door. I think I called out I was here. I had assumed it was the invigilator. When I came out I went to the hall but there was no one there. I then went to the security and asked if anyone had arrived to get into the hall. They replied no. I went back to the hall and no one came. Anyway, when I got back to Guy's and where I worked, the staff member in charge at the time called me into his office. He told me off for not being there. I told him I was there but in the toilet, and what had happened. In effect, he really was saying to me that I was a liar. I hated that person at the time. I was so angry. I knew I was telling the truth. It was years later, after I was diagnosed with Asperger's and read about lying, or rather not being able to lie, that I knew. I cannot tell a lie. The staff member left to work in another department at the other campus soon after that.

Want to learn more about autism?

There are lots of ways to find and learn about autism, and these are the ways that I am learning from too. Even though I have Asperger's myself, there is still a lot about being autistic that is new to me and I am finding out. So let's find out together. I split the learning into two sections: fiction and non-fiction. I will start with fiction.

Fiction

Of course I will begin with my own children's autism books 'The Rainbow School' and 'The Pet Rescuers' for 7-10 year-olds. The first series you can find out from my website www.julieaday.co.uk and the second series can be found either via The Book Dragon or Amazon. I have yet to organise for my website designer to put them on there. All of them can be found on the Book Dragon website https://www.thebookdragon.co.uk/

I have just bought the 'Geek Girl' series by Holly Smale. Holly is autistic and I believe so is the main character. There is also 'The State of Grace' by Rachael Lucas which is based on her own daughter who is autistic.

Non-fiction

There are a couple of digital magazines that I know of. SEN magazine and Autism Parenting Magazine. I have had one article in the latter and hope to have more, which will be about growing up with autism and how my mum helped me over the years. You can find out more about this magazine here https://members.autismparentingmagazine.com/dap/a/?a=55311&p=AutismParentingMagazine.com/freegift

There are lots of books about autism and how to help autistics in life. Here are a few that I know about and I have read: Dr Temple Grandin, Pete Wharmby, Jane McNeice, Steve Silberman. There is also 'Marching to a different beat' by Sarah Ziegel, a mother of four autistic boys.

There are also groups on Facebook/Meta who offer webinars and training to help autistic adults and children. The ones I know about are The Nurture Progamme by Jodie Isitt, Ausome Training by Evaleen Whelan.

There is one community where there is learning from webinars, training and chat groups with like-minded autistics. That is Neurodiversity Training International. They have a community App called The EndeeSphere App, which I am an ambassador of. There is a free membership, which comes with a 7-day free trial of the paid version to start with. You can find out more about them here https://www.endeesphereapp.com/a/2147773941/zqK5pxow

All of the above are run by autistics themselves, so know what it is like to live as such.

An Aspie and another change at home

 When I last wrote about a change in home, it was about me coming home after hospital and having carers myself. Those two weeks went and Mum came home, and that was the next change. I had spoken to Mum briefly on the phone a couple of days beforehand, thanks to a kind chaplain. Mum's voice then, which sounded frailer, should have made me realise how she would be when she came home but I was just glad to see her again. That day was really hard for me as I saw how Mum was for the first time. She was confused to where she was, which is a sign of delirium. Also she said some strange things to my brother. It was to be the start of her time with carers doing her personal care such as washing her. Although Mum had been very slow at walking before I went into hospital, she had been independent still and able to walk round the house. Do cooking and washing etc with me. So it was hard to see her stuck in a hospital bed and having carers see to her personal needs. Having experienced that myself during my own hospital stay after surgery, I knew what it was like. It can make you feel useless and frustrated. I had hoped that seeing me be able to walk about again might encourage and inspire Mum to do the same, but it didn't because her brain had changed with dementia and she didn't want to. I think she might have still been depressed at the time. I had to get used to seeing a new Mum, one who was confused a lot of the time and started saying weird things. Although Mum had had carers helping her before I went into hospital, these were new people, and it was hard to get used to at first, even though I did think that it was good that Mum was having the same carers day after day so she wouldn't get confused so much.

Did I get on with the carers? That is another story.

PS I know that the term 'Asperger's' isn't used anymore because of the history of the man whom it was named after, but I was diagnosed with it, so that is what I say and call myself. I also say I am autistic.

Resilience, Asperger's and the biggest change in my life

 I have been talking on here about being resilient. I have also been mentioning that people with Asperger's, like me, find it hard to cope with change. I feel that resilience and change go together, especially with me at the moment as I am going through the biggest change in my life (not talking about the perimenopause which they can call the change). I am of course talking about living on my own after being with my mum all my life. There have been times over the years when I did wonder how I would be and where when I was on my own, but it is nothing like I feel now. Here is how I thought about it over time.

As Mum's health and therefore her mobility got worse and she had to walk with a stick, I did wonder what would happen to me. I imagined at the time that maybe we could live in separate houses/flats next door to each other so we would still be there for each other when needed.

Then came 2021 when I came out of hospital and Mum came home, bed bound and with dementia. I knew that my previous image of the future was out of date. I now imagined that Mum's dementia would get worse until the time came that she had to go in a home. It would be a time of transition for me, getting used to living on my own before such time Mum wasn't  here any more. 

Then came last year when Mum came very ill and went into hospital, twice. That was a period of transition where I would visit Mum in hospital and come home to live alone the best I could. The year and a bit when Mum was home with carers taking care of her needs, was also a time of transition I believe, as I was the one who was doing all the work here at home as Mum no longer could. 

Until... the day came when I got the news she had gone. I miss her so much still.

In a way it is like I am sort of continuing life as I did when she was in hospital but deep down I know she isn't there. I get lonely. I get sad. At times it feels surreal still. My inner resilience dips at times when I cry. Thankfully I have the support of my brother and my friend to keep me going, most of the time. I also believe that Mum helped me cope with life over the years, especially the practical things such as washing etc. 

So, yes, resilience and change go together, as I believe you need some resilience to cope with change, especially when you have Asperger's.

Resilience and Me

 I have started blogging about being resilient, which I feel has come out in my memoir 'Endocarditis – My Journey' (available as an ebook from all good eretailers and paperback from Amazon or my website). Much of what has made me resilient is documented in there but there are other factors which aren't, namely what happened to me last year. Here are the main things I believe have made me more resilient in life over the last few years.

2020 – The year I had endocarditis and didn't know it. I just knew something was wrong with me.

2021 – My mum was ill herself, then I had to go into hospital to be treated, followed by surgery and recovery. Following my discharge and start of recovery at home, Mum came out of hospital herself and it became clear that she was changed. She had become bed bound and developed dementia. Although she had carers to help her, I became her main carer. This along with recovering mentally and physically from what I had been through, attending hospital appointments, and learning to cope with a loved one with dementia, was tough. With my Asperger's I did find it hard to deal with the carers at times.

2022 – Mum's dementia had got bad with her being nasty to me at times. Mum had an unusual stroke and went into hospital for three weeks. When she came out she had changed again to a more subdued person. So sad. Five weeks after she had come home, she caught sepsis and went back to hospital. The treatment for that cured her but caused another medical problem. The ongoing treatment and monitoring proved too much for her already frail body and she sadly passed away in August 2022. I had to cope with dealing with arranging the funeral and all the other things that go with a death in the family (but thankfully I had support from my brother and my best friend). I am now living on my own. Christmas was hard as it was the first one without her.

2023 – A new year, a different life being on my own. I plan to blog and talk about resilience in a medical capacity from this year on, based on my memoir and what happened to me.

Being an Aspie in hospital - Talking

Having Asperger's I always thought if I had to go into hospital again I would want my own room to have privacy. Little did I know that that time would come in February this year. I didn't have a room of my own at any time.

I first went into University Hospital Lewisham, London, on 4 February. I was admitted to a ward with only women and in a bay of four beds. The beds were spaced out well so I didn't really have much to do with the other patients. After a couple of weeks and lots of scans and tests, including daily blood tests and being on an IV antibiotic drip, I was transferred to King's College Hospital, London. It had been discovered that the slow growing bug in my blood had damaged my heart, and King's had a specialist team. So off I went.

In King's I was in a smaller room where it was only the two of us, so more chance to talk. I only started to talk to the other lady there when she began to get out of bed when she shouldn't have. I had another test which revealed it was endocarditis I had. They decided I needed surgery and St Thomas's Hospital, London, would be best for me as they have an even more specialist team there who deals with adult congenital heart disease. So off I went.

This is where I did talk the most to other patients. I now think it was due to us all being there with heart problems (one lady even had the same condition as me) so had things in common to talk about. I introduced myself and we talked. I feel that having others there in the same situation helped me to cope with it all. I was in that first ward for two weeks before I had surgery. The next thing I remember is being moved to the High Dependency Unit. The beds were spaced out well and I was too weak and focussed on recovering to talk to others, except the nurses who took care of me. A few I did chat to, when I got my voice back, and told them how I felt about being there. It helped me. After a few weeks, and a pacemaker being fitted, I was moved back to the first ward I had been in. I talked to the lady in the bed opposite to me. Again, I think I was able to as we were all there with heart problems. And again, I feel that it helped me to talk to others, which helped me to cope being there on my own. I did chat to my brother and friend on the phone nearly every day but having others there helped. In the last ward I was in, only for one day, I briefly talked to one of the ladies there.

So my experience as being an Aspie in hospital wasn't how I imagined it to be. I now feel that if I had been in a room on my own, I would have felt lonely and miserable, and wouldn't have got better as much as I did.

I realise that not everyone with Asperger's would want to be in a bay with others and want to be on their own.

If you had a second chance of living...

If you were given a second chance of living, what would you write?

As I have mentioned before, when I came out of hospital and I read children's books, which are short, that is what I wanted to write. I still do, even more so now. Why? It is something that my friend said to me the other week when I told her that I think a lot about what I went through and still can't believe I did. I knew that post surgery I had major problems health wise and to help my heart I was put in an induced coma for 3 days (I am not telling you this to horrify any of you), but what I didn't know was that I nearly died. I am lucky to still be here today and write. I feel that I have been given a second chance at living and writing.

So, I am working on building my confidence to go out again, and am writing what I love writing; children's books. I will be publishing the final book in my Rainbow School series later this year, and have started Book 2 in my new series. They all feature characters finding confidence in their lives especially having Asperger's like me.

One of my books does have a character who gets a second chance at being on Earth and helping her family. That is Book 1 of Geraldine's Gems series called 'One Good Turn'. You can find it on all eplatforms including here https://www.smashwords.com/books/view/217509

It is another reason why I am celebrating IndieAuthorWeekUK. I love being an indie author.

Why I love being an indie author

 I am sorry I haven't been on here these past few months, but if you know me on Facebook you will know why. For those who aren't, then the short story is that my health took a bad turn and I had to go into hospital. I had to have major heart surgery to replace a heart valve and a pacemaker fitted. I was in for nearly 8 weeks. I came home to an empty house because while I was in hospital, my mum had a fall and ended up in another hospital herself. She is back home now but bed bound with carers coming in to do her personal care and meals four times a day. I am still recovering but back to writing as an indie author. One of the reasons I love being an indie author is you are only accountable to yourself and when something happens like the above and you can't write, then it is a relief. 

Apart from a couple of ideas for short stories I jotted down pre-surgery, I didn't do any writing. I couldn't. It took so much effort to recover and get moving by myself again. It was only when I was home and after a couple of weeks when I read writing magazines that I thought about writing. Before I went into hospital I was half way through writing a cozy mystery but I didn't fancy writing that. I started reading children's books and decided that I wanted to write something new like that. I already had a few ideas jotted down. One came to me but it was all muddled in my mind. Then I saw a second idea and it jumped out at me. This is what I am now writing. A new series for 7-9s. I am enjoying writing again.

A reason I love being an indie author, you can write what you want and when. Imagine what might have happened if I was under a traditional publisher and writing that book... I will go back to working on the mystery some time but I am having fun writing for children, esp when the characters have Asperger's. It is under my 'autism meets magical realism' brand and 'learn about autism' umbrella.

Enjoy what you are writing and have fun with it.