suzefricker@mylifeaccordingtome.org Available all the time, just send me an email and I will get back to you.

Autism & Routine

A routine to an autistic person is as important as insulin is to a diabetic. With out a routine we can feel lost and are more prone to meltdowns as we are unable to deal with change.

The thing is, each autistic person handles change at various levels so the routine that works for one may not work for all.

So tips I have picked up for myself are:

  1. Work out how much change you can handle before you plan your routine;
  2. If you can’t handle change on a big scale make sure your routine is not so strict that you can’t allow for unfortunate incidents;
  3. If your routine has to be flexible like mine does as I am a back up carer for my dad, make sure that you plan far enough in advance so that you can handle the upcoming change.
  4. Understand that something may happen beyond your control and that if you are struggling to deal with it, it’s fine. Seek help and someone to talk to.

These are some of the tricks that have helped me.

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Inspiration

So I have had a string of people telling me that I am an inspiration and to be honest I do not understand why.

For me, I am just living my life. I have learnt ways to cope. If I have a meltdown due to my autism I work from home till I have fully recovered. If I have problems with my back I work from home till I no longer need to. If I feel low I try and reach out to people for support.

The truth is that every day for me I do not know what I could be doing because of all of my disabilities. Apparently though because I want to work this makes me inspirational. Because I, with all my disabilities still go out of my way to support others, it makes my inspiration. I do not understand this. For me, I am just living my life knowing what I can and can not do and I make the most of a bad situation. I still try and do things that everyone else can do but I do it in a controlled manner. Because of this, I have to plan well in advance what I am going to do. It doesn’t make me inspirational. It just me living my life.

I don’t understand how me living my life makes me an inspiration? Can someone explain this to me?

Living with someone with Dementia

Dementia is a very hard thing to be living with. Both for the person who has it and those who care for them.

My dad has vascular dementia which made his personality do a complete 180. It is hard for me to watch at times because he says and does things that before he had dementia he would never do. My mum tried to get him to do his physio that he was given and she was told: “I think we should get a divorce”. Him not knowing or understanding that no solicitor would take him on with his advanced dementia.

We had a period of time when he was falling all of the time. One night we had to call an ambulance out because he could not get up and there he was lying on the floor with his pants around his ankles as well as his trousers. Not a man wants his daughter to see him like that. He can’t even remember how to get into a car.

My father slips away in front of my very eyes and I just wonder why God would create an illness like this. I don’t understand why this kind of suffering is allowed. I am a firm believer that Euthanasia should not be an option but honestly, this sometimes shakes my beliefs. I see a man who is proud and has done so much for his community church, a talented musician fade away and is slowly being stripped of his dignity by this illness and it makes me wish at times that this was an option. Is that bad of me?

Why

I created a gofundme page so that I can start paying for support to help me with my independence. The only people who seem to be offering support for help with my needs are people who want me to commit money laundering. Seriously  What the FUCK.

I need home care support to help me;

Buddying to help get me out and about;

Autism Support;

All of this cost and I have no money because I choose not to be a disabled person who lives on benefits. I want to work. However, it seems that the only way I can get support for free I need to not be working 😦

I am not willing to commit a crime to get the money I need.

A bit Shakey

Life with a neurodiverse condition is hard enough however, life with two neurodiverse conditions which are polar opposites of each other is even harder.

At 16 I was diagnosed with dyslexia and slight dyspraxia. This amongst other things affects your ability to deal with sequencing.

At 31 I was diagnosed partially as suffering from Autism Spectrum Condition. This really makes me want to do things step by step and follow my routine.

Two neurodiverse conditions that are polar opposites of each other.

Normally the autistic side wins out with me and I am able to do things the way they are supposed to be done. However, 2 weeks ago I got over-enthusiastic and my ability to sequence what I am doing got me into trouble. Not only did it get me into trouble it left me feeling rather low. A few days later the autistic side of me took over and I realized where I had gone wrong but by that point, the damage had already been done.

I am feeling very shakey about this because I seem to of upset someone who I really admire and I am learning more about emotions so I am now 60/40% sure that I have upset her all because my ability to sequence fell down and the emotive side of my head decided to make a power play.

I do not know what to do.

I lost the support I had from the NAS when I moved to Chatham and have been unable to get free support set up since. Now I do not know what I am doing and am worried that I have damaged the relationship I had with this person. 😦

Some times I do not know how I manage to get anything done in my life having two completely different conditions. 😦 It is like a constant war in my head over who has control and I am going to get it wrong from time to time. How do I rectify this?

Secert Teacher

When I was in London this week helping my mum with my dad and working I watched a show called Secert Teacher.

Steven Barlett went undercover in a school to give two young people an opportunity they never would have had. But I wonder, where is the help for those of us who came before.

I am older then he is by 7 years so when he was in reception I was already in year 7 & 8. I had dreams but growing up for me in the 90s was hard going. Girls could not be autistic and dyslexia was ignored by schools unless parents forced the issue. So I went through school being told I was lazy and not understanding why I was not like everyone else. I honestly didn’t even think I would get GCSEs and thought that my only aspiration in life would be a toilet cleaner if that. All but one school wrote me off.

Where was my millionaire to help me? No where in site.

I am like many people in my age group who got missed and ignored by the system due to lack of knowledge and pure ignorance. Maybe one day someone will reward me and help me get the things I need done done. But that is highly unlikely. I guess this generation gets all the break and my generation gets to stay invisible and our dreams ignored.

Now I keep my dreams to myself because I know, I have no way to achieve them and where people like Steven Bartlett can succeed people like me can’t.

Giving Up

I feel like giving up.

Again I have been rejected for help and support for my disabilities. Everywhere I was being bogged off too I have tried to contact and in over a month they have not gotten back to me.

There are potential benefits that I could possibly apply but no one is telling me how to apply for them.

How the hell am I supposed to get support? I will have to pay for it now and honestly how the hell am I going to do that? £725 per month in rent £300 in bills and £370 to pay for a loan. £200 spare of my salary and £400 in disabilities which comes in once every 4 weeks. This does not tally with my other personal bills will I pay £250 a month to. I only get £1600 per month so I have to live off my benefits for food and other things so that I am able to get support.

I am an abuse survivor and no one is able to help me. I am seriously angry and upset.

Honestly, how can I continue to support other people when I get zero support in return. I feel like giving up.