Not Me

I never thought I would be in a position like this, where I am caring, toileting, showering and everything in-between to a young lady of 20. This kind of thing would only be thought about if your partner gets ill when you are elderly, not your own flesh and blood, your own child.

Everyday is a struggle, everyday is my burden.

Dodger didn’t show any signs of complications in her scheduled scans, no signs of being ill when she was brought into the world, no signs what so ever of any problems, until she received her MMR.

Dodger’s needs are not just about caring at home

I am the one who also deals with the outside world. The people who are put into places of authority or ones who think they have the authority.

These people need to understand, that the caring for Dodger is our 1^st priority, everything else comes 2^nd, 3^rd,4^th etc. Everything about Dodger is well documented with DWP and NHS. It is clearly stated that she is severely Autistic non verbal. But, these people are constantly on the want, badgering us, making situations arise when there was no need for it.

I will not at the moment go into more detail but 1 of them is still going since September/October of last year and the local Council will not even admit blame and actually come to resolve, just threatening letters keep being sent even though there are open cases. It has put a big weight on my shoulders which I can do without, a person only has so much endurance they can take not just physically but mentally.

I would like to know why we (everyone) are insisted to do everything online,but yet, the local council sends out letters, dated for example 10^th May, in that letter they say you need to carry something out by no later than the 15^th May, you receive the letter on the 18^{th May}. It happens time and time again. If it is all about proof, send it registered. They could also send it by email, and you have to tick that you received it ( this stuff is out there and used by companies all the time), so why not them.

When you deal with some of these organisations, they are furnished already with a lot of details, answers to questions they have, but they still ask and swear blind they are not connected to certain Government departments.

They know more than they admit

The Government has everything on their computers, and they are linked to the councils, and other institutions. We know this, but if you say this to them, they go on the offensive, and deny it.

Things do not need to be so difficult. For Gods sake, you are a employee of a business (that is what the Government is, what the council is etc.). Why are you acting as if you are in a position of such power, that you want us to bow down to you, caress your egos, when really what your job is, is to make sure that if people need help, you help them, if people want something done, you help them, if situations arise that needs attention, you sort it. It is not a position for you to walk around thinking we are there for you to treat as an inferior , You are there in your job to serve the public, our needs not the other way around.

Fighting for my daughter

I will fight for my daughter with my last dying breathe if needs be, and probably will have to. She has not got a voice, but I am the next best thing, in fact, probably better, because I will go to the extremes for her, protecting her, she has rights, and I will make sure they are acknowledged and carried out.

People need to be educated, they need to learn empathy, they need to understand and listen. I have been in many situations where I know it would of been totally different if it was a elderly person I was looking after, talking about for example, why, because people have parents, they get old, so they can easily identify with that situation, empathy etc. is given more, and with a lot less of a struggle.

Training in particular jobs

If people apply for a job like in DWP, County Councils, Local Councils, Benefit Agencies where they will be dealing with the public, which of course comes with many different types of households they should be given full training but more importantly posses a level of understanding about different circumstances that can be effecting a household. I am not saying that they should have a complete/full knowledge of all different types of disabilities etc., but they should at least understand and actually listen to that households situation and adjust the way they are approached, asked for things, and make sure that they are not at all being a burden/putting unnecessary stress on that household.

This also means time restraints, should be more flexible. Telling a household that has an disabled occupant and carers should not be given such a short window to respond to, fill in forms/answer questions for example. This puts such a strain mentally on a already vulnerable household. Have some bloody respect. You have no clue what goes on in these households, we are not looking for sympathy, we are looking for respect, understanding and empathy. This is your job, you get paid to ask for people to supply information, you have colleagues and systems in place that hold more information about us then we know. This is not a job for us, this is our lives. SO BACK OFF, GET SOME HUMANITY, AND THANK GOD EVERYDAY THAT YOU ARE NOT IN A POSITION LIKE OURS!

Good Luck

Matthew