Pain 

Hey readers,

My word of the week is:


because I received the letter from the DWP for a reconsideration answer for a request to look at my application again for disability benefit.

The answer was no and scored zero again. I even included a letter of support from my old CPN but it appears that they have sent out the letter two days before receiving my letter, I just don’t know I bother.

It is headache that I don’t really need and it’s making me feel crap. This is how it is now we have to fight for an appeal. my anxiety goes through the roof and I just don’t feel good knowing that I have to wait for the whole appeal process to happen which could take months.

This seems to be making my mental health worse, it just makes me so angry as I have worked so hard over the past couple of years to make small but big improvements.

I suppose I have to remind myself I am not alone and other people also have to fight. I just feel angry at the system which is meant to help the I’ll and disabled. but they have just let most of us down big time.

Cheers for reading X

Advertisements

Today

Hey Readers,

Today has been hard. Well not the whole day but in the morning where for the first time I took my eldest swimming. My husband and youngest were also there. I struggle with social anxiety, autism and a fear of drains.

The first half was ok as it was just me and my eldest. The swimming pool swimming features weren’t switched on so, therefore, a lot, lot quieter, phew! My hubby was with my youngest in a different area as my youngest was having a swimming lesson.

Close-up Photo of a Flowerr

However, the moment when the features got turned on and the crowds appear I am shaking. Then the youngest and husband come into the pool. If that isn’t hard enough my eldest has a friend who I didn’t expect to be there so that is another stress.

Before too long I was struggling, had a panic and all I wanted to do was crawl into a dark hole.

I didn’t manage the whole time arranged as I just couldn’t cope. The husband recognised that it was too much so suggested leaving early. Now I have the rotten mother guilt to boot.

Photography of Trees Covered With Snow

I feel rubbish, and I am literally shattered. It does not help that I spend most of yesterday feeling really anxious. All adds up – my mind and body are aching. Luckily hubby looks after the children when I sleep for a couple of hours. When lying down and sleep I just felt all the physical pain.

I hate anxiety!

Cheers for reading X

Please what

Please don’t mess with my brain,

It hurts and is nontraditional,

it works the way it is designed,

in non neurotypical manner,

I don’t understand the expectations,

so please be kind before assuming,

I am not rude,

I am just confused.

Autisitic Parenting

Hey readers,

Well my son has started school and one of the problems I struggle with being as an autistic mum is socialising with other parents.

The dreaded waiting at the school gates with the deathing noise makes my head spin. I physically shake and want to stim so badly that I need to control myself in order to mask these problems I deal with.

I know you ask why, why don’t I just be me. But it is not just me, it is my son as well. I am part of him and what I do influences him. Maybe not obviously but in the subtle ways with speaking to parents and getting that invite to a friend’s birthday. People judge sadly and what I do can include or isolate him, as sad as society is.

The hard thing for me as a parent is to appear shy/enigma in order to not let people see the real me as I am hyperactive/spontaneous, might not say the right thing. Laugh and be childish and not click with others.

No one ever prepares you for this and how it will influence your son’s confidence. Will I further fuck him up if I be me, should I hide away in order to make my son blend in better. Or should I be authentic as it provides my son of understanding disability and difference making him more acceptable of others that are different (not necessarily autistic). Just one mould fit it appears in this modern culture I feel and that all problems should  hide away as it still a taboo to be honest with children without some professional having a fit and pretending that everything is fluffy and cosy in life.

These are the kind of decision I have to make. I am currently taking a step back from school duties as the anxiety is so high and pariona is kicking in.

They say life is too short and you should just do what the fear wants you not to do. But to what extend is this not a good idea anymore.

Baby steps are hard for me as it is grey, I am all or nothing and I find it hard once I have an idea in my head to stop myself in committing to it fully. Alternatively I just shut down and have no interest in participating in the demotivated situation I have to face.All I want to close off, cry my eyes out, feel what is the point in doing it all. Should I have been a parent? do I have that right? and similar thoughts take over my thinking.

Nothing is ever clear, no right or wrong answers which for my autistic brain feels overwhelmed and can trigger a meltdown in order to try and regulate how I feel.

Autism is selfish or is it people don’t see I am trying to work my ass off that little bit more as every day is struggle and I have to make decisions fast.

it is frustrating when people think oh she doesn’t look autistic or she can walk down the road or she can communicate. When really most of it is planned, scheduled and played out like a script. Most of the time I am blagging it with the information I hold from past experiences/observing or reading how others deal with this as a parent.

Don’t judge me when you see me, I am scared because I don’t know what I am doing.

I am not good with emotions, they are messy and I don’t do messy.

I like order and structure, I like steps that have a sequence. When it is spontaneous and no order I am scared and my anxiety reaches new heights.

SO this is what I am currently trying to work my way through and yeah I can do a course and have some rules. But then things change, situation/environmental/age etc influence the shit I have to deal with. As we all know change is the enemy of an autistic person.

It is all very well having short stints of parenting courses to guild you but for an autistic person we need continuous support and sadly it is always because of the funds and people like to group everything in one category.

I always find it ironic that autistic people like logical order but that disability is so grey and complex it is unreal.

That is it that is one the many battles I undergo as an autistic parent and we haven’t even reached pubescent years…..oh what joy!

 

Cheers for reading X

 

Spectrum Sunday