When My Child Acts Differently Your Judgement Can Make Or Break Our Day By Emma Ben Moussa

I’m not sure why, but all of a sudden I had the urge to write… you see I have been up all night and I’m covered in bruises and bite marks… but it’s ok because the person that does it to me isn’t doing it to hurt me, he’s doing it because he loves me and this is how he shows it.

Unusual I know but let me introduce you to Sami and hope that this may spread some awareness of autism so the world becomes a bit more understanding for him in the future. 

On the 27th May 2015 I gave birth to a beautiful second son and he was immediately different from my first, he screamed so much we were put in a separate ward, I thought wahey upgrade!

Sami was very loud, he spent most the day screaming, he could not be apart from me and my family felt very unsure about looking after him- so they didn’t and 4 years they still do not feel able to look after him for more than a few hours although they do love him with all their hearts. 

6 months in I remember shouting up at the ceiling asking what I did wrong, why isn’t he happy? (sorry neighbours). My first born had just started nursery and was a bit behind with speech and getting over excited easily, at least that’s what I thought, but despite the nursery trying their hardest to show me something was different with Aymane I was so wrapped up in my clingy baby that I did nothing. To be fair my health visitor believed Aymane was just over excited too. 

At 18 months my Sami started talking; he said ‘mum’ and ‘dad’ and even his cousins name ‘Jack’ but then within a month it was gone and he has never said a word since.

He started to try find other ways to communicate, if he wanted a drink he would throw a cup at me, if he wanted food he would guide my hand to the fridge but if there was something he wanted and I couldn’t guess it he would get so frustrated and start hitting his head on the wall or throw himself to the floor over and over again. 

At the 2 year review the wonderful NHS nursery nurse said “I’m sorry but we have some concerns here, we will come back out and visit you” and true to their word every month I saw a health visitor and the nursery nurse.

Let me thank them right now because without their 2 years of constant support I honestly don’t know how I would have coped, they were angels. 

Sami does not sleep, he just cant, maybe he will get 1 to 2 hours a night but then he’s up and when he is up, the whole family must be up.

When it was time for nursery they were straight with me from day one, Sami needs assessing. I already knew at that point that Sami was different, on the walk down to nursey he would try to run in the road, he would lick car tyre and fence posts and he would take peoples solar lights out their gardens so he could lick them. 

At 3 Sami saw a paediatrician and we sat there for half an hour, I told him about Sami not sleeping, smearing his own poo on the walls, lining up anything that can possibly be lined, having absolutely no danger awareness, not being able to talk, eating inedible objects, chewing on things that should not go anywhere near your mouth, cracking his teeth on rocks and he diagnosed him there and then:

AUTISM 

I think I cried for days, now, I feel silly about that.

Sami is a gift, a gift no one else is lucky enough to have. Sami loves me and he shows it intensely, he’s stuck to me like glue, his smile melts my heart and when he has sensory overload no one but mummy will do. You need to squeeze him so tight and block out this busy world and the feeling that I am this angels world, is one I was always treasure. 

I went to the library the following day, I read everything I could, soon it became difficult to leave Swanscombe because Sami likes routine. I believe he feels safe in his home town because Swanscomber’s are kind, they are accepting, a community I’m proud to not only belong to but have the honour of being their borough councillor.

I set up an autism play group in Swanscombe because I was tired of going out and being judged. Too many times I have had people tell Sami he’s too big for a pram and to get out and walk, or ask him what’s wrong with him.

Sami cant talk, if you get in his face and ask him questions he cant respond to, not only are you frightening him you are building up his anxiety so when he lashes out at you he’s not being naughty, he is in a meltdown.

When Sami is happy he flaps like a bird; it’s called Stimming.

He’s quite happy in his mobility buggy rocking backwards and forwards watching the trees and enjoying nature when all of a sudden a face is there, the face is talking to him, he doesn’t know you and he doesn’t know what you’re saying but the more he doesn’t respond the louder you get. Mummy tells you to please give him some space as he’s autistic and more often than not mummy gets told “oh he will grow out of it we are all a bit autistic.”

He most certainly wont!

He was born this way, he’s perfect. I feel so sorry for those wonderful autistic children who had to mask their autism to try and conform with what is seen as normal. 

Sami is now 4 and my baby is off to a wonderful special needs school in September called Ifield, where he will learn Makaton and we might eventually be able to communicate with each other.

We have a bright future ahead for him, it may not be the one I imagined but he’s getting all the help he deserves thanks to the wonderful NHS and Cygnets pre school.

My hope for Sami is that people become aware of autism, he’s not naughty, he’s not stupid.  He is truly amazing, battling sensory overload everyday! 

My eldest is my superhero, he adores Sami and sees him as special not odd and most the children around us do too, it fills my heart up seeing Swanscombe accept and include Sami.

We even get birthday invites from Aymanes friends for Sami, which is something I never thought would happen. 

Aymane is only just diagnosed with ADHD, I missed it, I never noticed because Sami’s care is so intense. I realised what Aymane’s flapping was when I learnt about Sami but his school do not see Autism in him so he just got diagnosed with ADHD.

I have one child that talks too much and one that doesn’t talk at all. I also have the most perfect children, they are my biggest challenge, my greatest achievement in life. They made me stronger than I can ever imagine. I can walk in to a council chamber with no sleep, covered in bites and bruises and think “I’m an autism mum no opposition can faze me. “

Although I have to admit I do occasionally lock myself in the bathroom just for some peace. 

My point in writing this is because, A I needed to get it out and B I would really appreciate people learning about Autism.

It’s a hidden disability, I also have a hidden disability and I find the judgement is sometimes harder than the actual condition.

If you see me being bitten by my child his not being naughty, something has made him anxious he needs to be close to his mummy, he needs to feel mummy, be completely enveloped by mummy so that he is safe again. I know it sounds strange but its part of Autism.

My boy is a superhero and I am a lucky mum.

Tory Britain: A Modern Day Disaster Zone By Lisa Mulholland

By Lisa Mulholland 

When I hear people use the phrase ‘emergency food parcels’ it conjures up images in my head of a a war torn country or perhaps a place where a huge scale disaster has hit. I think of a place which has no infrastructure to deal with the problem at hand.

I do not think of the United Kingdom and I certainly do not think of a hardworking nurse needing to use an emergency food parcel.  Yet surprisingly and shockingly it is what is happening. Right now. All around us.

1 million emergency food parcels were given out to families in the UK in 2016 according to the Trussell Trust.

I don’t know about you but before 2013 I had never heard of the term ‘foodbank’. But now it is a term that is quite commonplace.

What does it say about us as a society when people, both working and unemployed must go cap in hand to collect an emergency food parcel?

Recently the Red Cross was called in to support the NHS in what they called a ‘humanitarian crisis’. I found this difficult to believe until I recently had the misfortune of having to visit my local A and E department. There was a 7 hour wait and when I heard the staff call out via tannoy message “We are in crisis tonight please go home unless your injury is life threatening”. I could not believe my ears. 

As a nation, we used to send emergency food parcels to countries that didn’t have an infrastructure to support its most vulnerable in times of war, drought  or disaster.

In churches, schools and local supermarkets we used to do collections for them and I remember feeling fortunate that I lived in a society that, I believed, would never experience such poverty.

But all I see is now is collections for food banks and local communities.



So what has changed?

What went so drastically wrong?

We aren’t war torn, there has been no catastrophic event and there have been no natural disasters. So where is the mainstream media outcry?

There isn’t any. It has been normalised and we have become anaesthetised to it. 

In fact, the Conservative Party and the Mainstream Media would have us believe that our economy is doing just fine. That unemployment levels are at their lowest since 1972, according to the Office of National Statistics.

And that nothing has changed.

But it has.

And quite startlingly so. The decline has been rapid.

To my mind there has been one catalyst, that has set off a chain of very unfortunate events that has led us to the situation we are in today and that was when the Conservatives entered government in 2010.  

They did not arrive in a ‘landslide’ fashion.

There was no overwhelming support for them.

They slithered quietly into power on the back of a hung parliament and had to form an alliance with the Lib Dems just to form a legitimate government.

Yet the chain of events that they have set in place with crippling austerity, targeting the vulnerable, and the disabled has been so severe that the UN launched an investigation into it.

Yes we, the United Kingdom were not only investigated by the UN but our austerity policies were found to be in breach of international human rights laws.

Shameful, abhorrent, cruel. But again, where is the media outcry?

We now hear terms like ‘the working poor’ being used. A term I have not heard in my 38 years of life but that is now a widely understood term in our society.

And now according to a leading Professor (as quoted in the Evening Standard) life expectancy improvements have now started to slow down since the dreaded year of 2010.

The rise of homelessness has doubled from 2010 and that rise is not slowing down. The number of rough sleepers has sharply increased from just under 2000 in 2010 (when Conservatives came into power) to 4,136 this year.

An increase of 134%. 

If the Conservative Party could be compared to a natural disaster, I would say the one that resembles them the most is a tsunami.

They have hit us with wave after wave of bad decisions. And it feels like it is impossible to come up for air.

Just when good old Corbyn forced a U turn on child tax credit cuts, or when the plan for all school to be academies was overturned, every victory has been minimised by the mainstream media while at the same time we are hit in the the face with some other nasty Tory policy proposal.

And that is how it has gone on.

With each fight against some awful decision; some awful cut they try to impose, they simultaneously hit us with another.

How can you come up with air when the waves of cruelty keep coming?

I feel like we are living in our very own disaster movie. You know the one where all the experts like the meteorologists warn of impending doom but no one listens until it is too late.

I feel that’s where we have been with this Conservative government.

In our case we had the economic experts warning us about Brexit. We had the small independent newspapers telling us how austerity would cause poverty. But then you had politicians like Gove putting down the experts with his famous quote last year when he said, “The people of this country are sick of experts”.

No one listened and now look.  

Most disaster movies have a happy ending. So what do we do?

Do we sit and wait for the happy ending to just arrive itself?

I certainly won’t wait. I will keep writing, blogging, petitioning and campaigning until everyone gets the message. And I urge you all to do the same.

The Conservatives don’t care about you or I (unless you are a millionaire).

They never have and they never will .

So if we want our happy ending we need to fight for it in any way, possible.  And soon!

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Sources

The Trussell Trust

The NHS Staff Are Heroes, So Why Do We Let The Government Treat Them So Badly? By Kelly Grehan

This article was originally written in the Summer by Kelly Grehan
  

Two weeks ago I had a mastectomy. I went into St Thomas Hospital where surgeons removed my (currently) healthy (and frankly beautiful) breasts and reconstructed new ones using tissue from my stomach in what is known as diep flap reconstruction.

 

The reason I chose to do this is I have a defective brca 1 gene. This gene is usually a tumour suppressor, but it’s faulty status in my body gives me an 80% chance of developing breast cancer.

 

Since I told people about my decision to proceed with the operation, thus reducing my cancer chances I’ve had a lot of people tell me I’ve made a brave or heroic decision. Of course, that is not true, I was in the fortunate position to be able to take control of my own health and future. There is a hero in my story of course, in fact there are several: the NHS and their staff.

 

How could I have taken a decision like this without the NHS? From the moment I saw a genetic counsellor at Guy’s Hospital who talked me through the decision to take the diagnostic test to the nurses I saw at the Wound Clinic today I have been treated as an individual with individual needs and have been dealt with by highly trained individuals too numerous to mention, but that include surgeons from two highly trained teams (breast and plastics), anaesthetists, researchers, specialist nurses, physios and other great professionals like porters and health care assistants as well as volunteers supplying services such as the patient cinema at St Thomas’ and helping in the waiting room at clinics.

 

In all of this, despite the nature of the decision I made and the operation meaning I spent a lot of time undressed I never felt I was losing my dignity. I was helped to shower, comforted as I vomited, helped into bed and had my complicated wounds checked every single hour. The empathy of the nursing and other staff left me feeling good about myself.  

 

I also never had to make any decision in which cost had any bearing at all. Money was simply never mentioned at any stage. Compare this to the situation I could have faced were I an American citizen where my decisions would be governed by the level of insurance I had. Where I may be tied to my job because of the insurance package it gave were the procedure to go wrong at any point and revisions needed. Where I might find parts of my treatment were covered and others not and where the threat of reduction in Obama Care might have forced my to make decisions early.

 

Now ironically my hospital room overlooked the Houses of Parliament and I happened to be recovering when the Labour Party amendment to give public sector workers a modest pay increase was voted down by the tories to cheers and cackles. Austerity has left public sector staff getting progressively poorer year on year. At the same time the tories have continued to cut tax for top earners.  

 

The number of billionaires in the country has actually risen, this is in a context where the nursing bursary (a recognition of the work students nurses provide on wards up and down the country and the hours they study making it difficult for them to support themselves) has been scrapped. Rather than scrapping it there is a credible argument student nurses should be paid the minimum (sorry, living) wage for the hours they spend working for the NHS. Indeed I was cared for by several students nurses during my stay in hospital. Looking after sick people is no easy task and they all did brilliantly. It’s an absurd thought that they are reliant on loans and overdrafts to allow them to carry out this work and that after a 12 hours shift in the hospital some will have been off to other jobs just to pay their rent. The nursing courses are tough, and that is right as it is hard work, physically, emotionally and academically. Why on earth would we make it hard to survive financially too?

 

It’s not just student nurses hit by austerity. 17 nurses a day apply for payday loans and there has been a rise in nurses attending food banks. A 40,000 shortage in nurses is, maybe unsurprisingly, predicted,

 

Then there is the treatment of other hospital staff. For example last week porters, security staff and domestics at Barts Health NHS Trust who are actually employed by Serco (but paid for by taxpayers of course) decided on strike action. They are asking for a 30p per hour pay increase. Serco made profits of £82 million last year.  

 

This country is the 6th richest on earth. Why are we happy to treat our health care workers with such disdain? I owe the NHS staff a huge debt of gratitude, as do many others. I am ashamed that this country is not prepared to reward them with recent pay and conditions and I fear in the future many people, in my position will simple to enjoy the excellent treatment I did.  

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