About myself

I have autism like any other person, but I’m not the same I am an individual with autism and not the same even thought I have the autism differences that we all face on a daily basis

Also I have co-morbid differences to. Intellectual learning disability, Irlen syndrome, mental health , dyspraxia they are all labels but are not my personality. I am who makes me, me those differences are part of who I am but they don’t define my personality.

Anyway I want to blog about what things are like for me. Yes I face many challenges every day and yes I get through them but wouldn’t of managed without the extra support from people.

Tinnitus

For Years and years i had experienced something called Tinnitus. I knew i had this but i would recently go to the doctor about it because it became unbearable for me to cope with. I have now officially been diagnosed.

Tinnitus is different for everyone. Some hearing ringing, buzzing, hissing, whistling, musical sounds. I  hear mine so much it goes high pitched and that is when i cannot bare the ringing like right now typing away. There can sometimes have damage to your hearing and sometimes they arent. Mine was not damaged so music in my ears would not of damaged it but like me there is no known cause. I had for years since a kid but it got unbearable over the years

Yesterday i went to see an audiologist and could not find anything wrong with my hearing so i past the hearing test, but is referring me to see someone so that i can cope with my tinnitus.

I was struggling to sleep and was getting frustrated with it because i could hear it when i was sleeping when usually do not and its annoying me. It makes sense that in order for me to focus i need music around me, and i can concentrate in a coffee shop doing book maybe because i cannot hear it when music and noise is blocking out the sound.

Next stage they are going to refer me to the audiology department so that i can cope with the Tinnitus reading the leaflet they handed me said about counselling and sound therapy to help. I am assuming they were referring to that as the doctor was not clear on what they do meaning he did not talk in a clear language to me which i interpreted as gooblygook

*Trigger Warning* Victims vs survivors of horrific abuse

I am a  Sexual Assault/rape/Sexual Harassment survivor, domestic abuse survivor by my father/friends. and a survivor to abuse of intimidation/harassment/controlling/bullying behaviour.

Each day i have to tell myself it will get easy but it will take time. Time is the key to recovery, flashbacks is a form of healing. Never let anyone tell you that it is your fault, even if you drank. It is no excuse for behaviour like that.

Years i had grew up being abused and years trying to come to terms with but enough is enough.

*Domestic abuse = Physical, Disabled Hate Crime, Financially Exploiting me, Neglecting me when needed dressing for my burn wound but instead hurt me

* Bullying – Autistic disabledist names, false accusations against me for something i did not do.

*  Sexual Assault – inappropriate touching

* Pinned to a wall against the school for telling them that the escort was hurting the children on the bus

* Physically abused – college would not take it seriously and threats to involve the police but had to get the Disability discrimination adviser in because i was bullied so much with physically that it broke my mental health down and i was suicidal and psychotic at the time.

* Threatened to be beaten up

*Pranks

* Raped twice in my life

* Stranger danger- nearly put myself at risk at neighbours flat. A not very nice area full of drugs, alcoholics and threats that i was so vulnerable a day i was to focussed on finding my bookcase that never arrived that he approached door told me to go in and i started feeling uneasy as he was trying to distract me from my question. He told me to sit down but i was not feeling safe and left the building. I was so so scared.

* Sexual Harassment

* Controlling/manipulative/defamatory behaviour

I am marked down as being substantial in the abuse area by social services but i do not feel protected. Police letting you down all the time because you have disabilities. Because you are trying to survive it is like they do not want you to survive.

The easy option yes maybe to call the police but are u going to want to if u feel like they let u down. that you are supposed to feel protected but letting the most vulnerable down. You feel as you are not believed because you are guilt tripped into making you believe its all your fault that you bought it on. But it is not our fault! We should not have to put up with this and i will not stand for this.

Nowadays i have been so many times been abused that i will not take any stand for any kind of behaviour by anyone. But i am extra hypervigilant to protect myself from anything further happening.

Burn Survivor

I was 11 years old i burned my foot quite badly that i ended up having to go to the burns unit at another hospital how i hated the travel as i was car sick each time i had to go.

Burn skin graft
Burn Skin Graft taken from my thigh 13 years later and has not healed

What happened was i was making my mum and dad a coffee yes at age 11, in the kitchen. The kettle boiled but the stand was falling of the chopping board and i was trying to save it for spilling but it would not so i let go and it went everywhere and down the counter then it hit my foot as it reached the ground

I went to the accident and emergency hospital ward and remember being in a ambulance for the first time carried down in this carrier as i had this gel stuff on my foot which the nurse opened up the curtains and said what is that smell.

All’s i cared about was going back to school and i was advised that i would be off school for a while.

Now a days i am going to write a book about this in future as don’t want to spoil it but i am scarred for life, i had a skin graft and 12 years later i have still got it – not healed.

Recently i have been emotional over it the fact that i kept getting itchy and wondered why and found out some information to discover that it means

It is a result of nerve endings growing back, which are often damaged through the injury or surgery. Unfortunately, there is no complete cure for this distressing problem

This did not make me feel any better but worse that i would be scarred for the rest of my life. It has been psychologically emotional to cope with

squashed toes
My toes squashed so much that u cannot seperate them

During the skin graft they were trying to separate my two toes apart as they were stuck together but they could not even pull it apart as you can see to the left

Day 3 -mixture of feelings

Today is day when I usually get support workers come in the house but for the past 3 weeks I’ve been ignoring them banging on my door. Puts my phone on do not disturb . I am scared of them. What is the point them coming over every Tuesday to upset me because that is all they are doing to me and I am scared to even answer the door to them. I should not have to feel that way. They gone away to find my phone has 2 missed calls from numbers I do not recognise.
So I try and ring the senior social services to chase up what’s happening with my complaint.

So complaint has now been put through the process procedure against my social worker and my support team although I’m anxious it will make it worse. Apparently it was just sitting there doing nothing as she wasn’t sure if I needed an advocate but someone sorted that out now.

After ringing up the chemist apparently I found out I had been without my medication for 3 weeks well that’s helpful that my phone when go in find out that my mobile never received a text to tell me my medication was even ready. I have now taken it and feel so tired and a bit calmer .

Whilst walking back home my phone was ringing whilst music playing ‘oh great I was enjoying my music’ but I let it to keep ringing and ringing because I thought I knew who it was despite no caller Id displayed.

Diary Blog Day 1 – Feelings Grieving

I thought I would start blogging each day not just on topics but on some of my life . What’s been good and what’s been bad kind of thing. So this is going to be my first blog but my blog is on how I am feeling today and this is something we shouldn’t keep hidden it should be talked about and not judge.

So I woke up feeling low the day after I was thinking about my dog as it was his birthday yesterday and he would of been about 6 years old and well I loved him so so much but we lost him before he even reach his 2nd birthday.

He is very much loved and was my best friend, a companion that I could talk to and understood me very much. I remember all the happy times with him but I still love him and miss him. In fact every birthday I would always think about him. He helped my autism and I could do with him right now helping me through these difficult times I’m having with my communication barriers with professionals and he helped me with my communication.

Anyway depression sucks to the point I can not motivate myself to even get myself out of bed today just feeling sad and tearful and I know things need to be done but I just grieving. Just lying in bed is the easy
option but I know will make me think more. I know I need to do the house work, I know I need to make my bracelets but I cannot even motivate myself to point I do not feel stressed.

I just need a few days where don’t have to worry about fundraising and take a few days out doing something I enjoy to help me going

Bullying and disabilities

Are u the easy target of bullying because you have disabilities. I am certainly . People taking the mick if you smashed your screen because you fell over because of your dyspraxia. I would love to laugh at them, if they did the same thing.

Bunch of bullies are awful. They make you feel bad every way and try and make you very ill because depression sucks.

Am I joking, are u taking the Micky and getting far to low offers that are taking the piss is all bullying. How would u like it if you were bullied you wouldn’t like it would you, then why do it?

Yeah u would laugh at someone with disabilities wouldn’t you and now thanks I’m back into depression again.

Please stop whatever your doing and think before you do it.

Depression

I am having some severe bouts of depression right now because of negative experiences which also have led to nightmares occurring

Depression is something you are diagnosed it can be used negatively in when someone goes ‘ I’m feeling depressed’ that’s not the same thing.

When you have depression it can crop back in your life although you have treated it – it can crop back when some awful situations are happening in your life which makes you have dark thoughts . How hard it is to fight that nasty enemy of your shoulder sinking back into depression giving you those dark thoughts.

Yes they can make you feel like you have no energy, lacking in motivation, and feeling like giving in but one thing I have learned
Don’t let the depression win, yes I know it can be hard but you worked so hard to get yourself out of that you don’t want to be back in that place you were before you must be strong and keep going forward.

What helps is having those support around you to offload for a bit. Alls we need is that support, empathy around us to remind us we are stronger than we think, that we can get through this that don’t allowed that situation into dragging us down into that thought

What doesn’t help:

*Don’t say to someone don’t be silly it’s unhelpful advice

*Don’t say don’t do something daft , because that makes us feel more worthless

*Most importantly don’t make us make a promise that we may not be able to keep because if we are unable to keep that promise we are going to feel bad we let down that person who we made a promise to.

What Helps:

*Just bit of empathy
*Understanding
*A shoulder to cry on
*Non judgmental advice
*Remind us we are strong
*Remind us how far we have come
*Try and make us laugh
*Hugs (some of us like to be hugged during these times)

*Remind us of what we use to calm us down using distractions (ie – sensory toys)

Meltdowns vs Shutdowns

Many people with autism like myself have a meltdown and a shutdown which is uncontrollable because an example that I have had

‘Not understanding what the bank is telling me, but the communication barrier is there not understanding what I am trying to tell them and they keep getting it wrong continuously and with that communication barrier that gets so overwhelmed that my brain has exploded and had a meltdown on the phone which either response is shouting and or hanging up on the phone not able to control my feelings’

Another example would be:

‘ I walked out of my house without my key, either because I had been under a lot of stress, or not woken up but infact I also have Irlen syndrome which contributes to my forgetting things. Despite them having my disabilities on there file a nice guy who thought was nice I fell out with. He would tell me he would come out straight away and I call 30 minutes later wondering where he is and he is on lunch and guess what the lettings agency would say to me ‘why can’t just come out to you there is a £25 fee, although I was exempt from paying by other staff’ … I had a meltdown by shouting down phone ‘ I’m getting support on to you’ and I couldn’t handle anymore communication barrier and hung up feeling scared, upset, tearful because I don’t like being out for to long I needed to feel safe. Although I not feel safe around the area I just wanted to get away from every bit that cause anxiety being out.

Now these examples would get mistaken for a tantrum.

What is the difference between them both?

Tantrum is looking for attention and controlling and being manipulative

Meltdown is a uncontrollable emotion in a response of trying to process what has happened or happening which can lead into overloads.

Then shutdowns finally when you have just had a meltdown from having an overload over a communication barrier like myself after crying so much I totally shut down. I feel no emotion a tall it makes you feel awfully tired it’s a way the brain is processing everything that’s happened and has switched off because it cannot handle anymore overload as it all exploded.

Sensory processing issues

Everyday I have been having severe sensory issues. It started again due to the thunder, fireworks which is now every Friday and then the loud noises of drilling/shouting and even very loud music more than I can handle.

When I am having a massive sensory overload my body shuts down and feels pain ‘shock’ a discomfort feeling with more issues because my body is trying to find a way to deal with the shock feeling my body can feel.

What happens during my sensory overload :

*Rocking
* Humming
* Hand Flapping
* chewing on my fabulous Chewigem Chewigem website

During these times it affects my every day living one being forgetful , to another falling over, to another having meltdowns in otherwise a way the brain is trying to process what is happening around us or said to is but not understanding and the more confuse us the more confused the get my head builds up until it’s exploded and then a meltdown ‘uncontrollable’ comes out without meaning to.