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.

Collapse of Football Clubs Is About More Than a Loss Of Sport By Kelly Grehan

The scenes of Bury fans scrubbing and sweeping their club’s ground yesterday, as they awaited news it was to be removed from the football club were truly moving. Only matched by the sight of fans from other clubs who had come to lend a hand, much in the same way neighbours offer to make tea when a death has occurred: in the hope that by being useful they can somehow reduce the grief.

I used to go and watch Tottenham Hotspur with my Dad as a teen. With no personal interest in sports, it was never the actual match I enjoyed. No, for me it was the feeling when walking towards the stadium and the feeling of excitement and anticipation from everyone, I liked, the part where the teams came out to the theme music and the points where everyone celebrated or commiserated after goals I enjoyed. There was even something a bit special about walking back to the car after a result knowing everyone walking along side was experiencing a similar emotion based on the result.

Of course, I have not been to watch a live football match for many years now. Fewer people I know watch football now too, many priced out of following the team they love.

I think the beauty of English football in the past came from the fact that it gave a lot of people a place to belong and a sense of attachment to something steeped in history, in which they could share experiences, hopes, dreams and despair.

But of course, football clubs have increasingly become less affiliated to the community in which they sit. Very few people can afford to go regularly to the club which sits in their town, let alone take their whole family. The days when Saturday was all about football have also ended, with matches played on Mondays, Sundays and even Fridays now too.

It seems like stadiums are increasingly filled with people from outside of the area and with no particular interest in the club

So without local people filling up the stands in them, what do the people who would once have filled them do?

Many Bury fans yesterday described the loss of the club as akin to the loss of a friend. I think for many it is also the loss of heritage, history and the knowledge there was somewhere they would always belong. I wonder what communities experiencing this loss do to replace it. I wonder if one reason for the massive rise in mental health problems, particularly in men, is the loss of places to belong too, and the inevitable isolation this brings. In the past a lot of people would have found solace in fellow sports fans – travelling, sitting and chatting together.

The loss of this way of life is immeasurable.

RIP Bury FC

Loss of Small Businesses Means Loss of Community By Kelly Grehan

I have to be honest and say I have always hated shopping.  If I can buy something online, rather than venture to my local shopping centre I will.

Since the internet became popular I do buy increasing numbers of things from craft and independent retailers because I like the niche products they often stock.  

I started running a Toy Appeal five years ago, which now collects around 1,500 gifts for children assisted by local charities and it would not be such a success without the support of small businesses.  

We write to all the big multinational companies who have a shop in our town and ask for support and they inevitably reply saying they cannot help.  

Small businesses however regularly get in touch volunteering to be drop off points, running collections and donating toys, as well as sharing our social media adverts.

Now, I appreciate that big retail shops will say that they make big donations to a chosen charity and that some have a place for food bank donations, but my experience has convinced me that the loss of independent shops on the high street has meant we have lost more than just the goods or services they sold – it has caused the loss of community.  

Local businesses have a stake in the community, they are reliant on the same amenities as their customers.  

In fact research shows that £10 spent with a local independent shop means up to an additional £50 goes back into the local economy.

This is simply because the nearby shop owners, who you are spending your money with, will then put that money back into your local community by going into local pubs and restaurants etc, thus circulating the money and allowing your community to thrive.

Interestingly local employers are more likely to pay a higher average wage than their commercial chain counterparts.  

Then there is the benefit for people of going to shops where the butcher (for example) knows their name and they know his or hers.

Those small things can mean the world of difference to locals, some of which can be suffering from loneliness and don’t often have the opportunity to speak to people face to face on a daily basis. To have a chat with the local staff and feel valued by local businesses who might know your ‘usual’ coffee, or just how you like your sandwich when you pop into your local cafe, does wonders for some. Humans are social creatures after all.

So next time you have the option to ‘buy local’ , it’s really important to remember the wider benefits that small businesses have on the local community.

This Saturday is Small Business Saturday, so I am pledging to think more about what I buy and where I buy it and whether I can be a better consumer for the community.

It would make the world of difference if we all could now and again.

The Long Summer Holiday And How We Fail Our Children By Kelly Grehan

The long summer holidays. The time children look forward to all year, the chance for family time, holidays, adventure, time with friends, visiting new places…

That’s the expectation anyway.

Sadly, the summer holidays are becoming a time of dread for many families as increasing numbers of people struggle to feed and find affordable childcare for their children.

As schools try their best to ensure income differences are not felt by school children throughout the year (with mixed successes) the holidays has become the great differentiator between children according to the wealth and circumstances of their parents.

As some families fly abroad for new experiences and relaxation, for others survival mode kicks in, with the six weeks something to endure rather than enjoy.

With free school meals guaranteeing that all infant school children and those deemed economically impoverished receive at least five cooked meals a week; the holidays sees the removal of the safety net for up to 3 million children.

This problem is recognised.

In fact an all-party parliamentary group on hunger found there was a “deeply troubling” impact on children who had gone hungry over the holidays and returned to class “malnourished, sluggish and dreary”. They received evidence that affected children “start the new term several weeks, if not months, intellectually behind their more fortunate peers who have enjoyed a more wholesome diet and lots of activity”.

This is further backed up by a 2016 survey by the Association of Teachers and Lecturers where teachers also reported a deterioration in the mental health of those children concerned.

The union blamed low wages and changes to benefits for the ‘unprecedented hunger’ they had witnessed in children.

Further evidence comes from a 2015 study based on a 580 low- and middle-income parents, which found that 62% of parents on less than £25,000 a year can not always afford food in holidays!

For parents with incomes of less than £15,000 the figure rises to 73%, while 41% of parents in low-income families had skipped meals during holidays so that their children could eat.

Very sadly 22% of parents said they had avoided having their children’s friends over and 17% hadn’t invited family to their house during the holidays due to a lack of money and food.

So this means the children are further disadvantaged in missing out on company and stimulation.

The problems do not cease with nutrition.

With increasing numbers of working parents living without nearby family support and without the means to afford childcare while they work, many are faced with a dilemma about where children should spend the day.

The NSPCC last week revealed an increased number of children left alone all day during the summer holidays.

The charity warns that although the law does not give a minimum age at which children can be left on their own, parents and carers can be prosecuted for neglect if they are put at risk of suffering an injury.

Imagine the predicament for a person, maybe struggling with the rent, to put food on the table and knowing that their job does not pay enough to cover these and childcare; or maybe receiving a call from a zero hours employer and having no options of where the children could spend the day.

Leaving a child alone may seem a risk which must be taken.

A child left alone, or in charge of younger siblings, possibly for days in the holidays is missing out on structure and security.

Even for those parents on average incomes the holidays are now a struggle.

The cost of activities once enjoyed for a reasonable rate such as the cinema have now become extortionate, rising expedentially to that of wages.

Holidays in the UK and abroad in school holidays can now be double of those in term time.

Libraries and Sure Start Centres which traditionally supplied free entertainment and activities are closing or withdrawing services.

The old first day back to school tradition of writing what you got up to in the holidays must be a dreaded and distressing experience for some children with it further emphasising their exclusion from parts of life enjoyed by their more fortunate classmates.

What strikes me if that, once again, is that there are a group of children – a significantly large group of children – who are being failed.

They are spending significant periods of their formative years hungry, alone, under stress – all things that are likely to impact negatively on their mental health, their school attainment and their self image.

Despite the rhetoric of this government this is not a poor country and we can do better by our children than this.

People Are Bloody Brilliant By Lucy Chapman

I have been living in a world of negativity, probably since David Bowie died,  not that I’m blaming him; I think he got his timing spot on. 

Then Alan Rickman, then Caroline Ahern and Victoria Wood finished me off. But this isn’t about them.

There was the Brexit referendum here and Trump winning the election in the USA. I found the injustices of our selfish, immoral and heartless government so overwhelming that I felt duty-bound to start attending meetings with the opposition party to fight the good fight. I also felt compelled to put pen to paper and write about these issues for others to read about but the research necessary simply lead me down even darker paths of corruption and lies; the fire of anger and passion raged even stronger than before.

Writing wasn’t a comfort but a catalyst.

But this isn’t about that either. This isn’t even about Kim Jong Un pissing in corners or concerts where children are being bombed, or police being killed trying to save lives, or Muslims being stabbed on their way to worship. No, this all contributed to the anger churning inside, this was my view of the world and I was getting simultaneously more angry yet more numbed to these events and even bored of trying to argue against them. I was writing blogs about how rubbish things were and at the same time was totally fed up with reading the moans of other people, even when I agreed with them… But yesterday at 4.45pm, I set up a JustGiving page…

My good friend has Cancer. At age 36. Two years after beginning a new life, newlywed with her wonderful husband. This isn’t fair. I got angry some more.

She had radiotherapy, chemotherapy, she’s down for surgery but the tumours are too big, the chemo isn’t working, more aggressive chemo then… still not working.

There is a drug, Avastin which could potentially help shrink the tumours to a size that is operable. I will leave the disgusting practices of Hoffman la Roche, the company who supply this drug for another blog. A company who I have heard described as ‘not even amoral but immoral’ by a Doctor.

The upshot is, Avastin is not deemed cost effective enough to be available on the NHS. My friend will have to pay.  

The drug costs £1500 a session, she needs six sessions for this round and it’s very likely she’ll need at least six further sessions.

Yesterday at 4.45pm we set up a justgiving page and we were blown away. In five hours we had raised £6,000 and by morning her first course of treatment at £9,000 was covered and now we’re collecting for the next.

What struck me, and turned my attentions away from how shitty this situation was for my friend and towards how bloody brilliant people are, were the comments left by people making donations and seeing the range of people who donated.

My friend is a teacher and we saw pupils, ex-pupils, parents of pupils donating. One a twelve year old who gave £10 towards his teacher’s treatment. Friends donated, relatives of friends, friends of relatives. One donation came from a young woman / teen whose brother’s girlfriend’s mum is a friend of my friend. She didn’t need to do that! She is a wonderful person!

People who’ve only ever come into contact with my friend via social media sent funds and one complete stranger donated £250! These people are bloody brilliant.

It wasn’t just the money either. 

A man who I’ve met once contacted me to offer to DJ for free for a fundraising event, an ex-pupil now singer emailed me to offer to perform for a fundraising event, a friend started contacting local venues to put together a concert, the head of a teaching union in our area asked if he could see how they might be able to help. This was phenomenal. These people are bloody brilliant.

So stick it death.

Stick it Trump.

Stick it Putin and Kim Jong Un and Theresa May.

Stick it Boris and David Davis with your crass double-D jokes.

Stick it politicians with your penny pinching, grubby little mits all over our public services.

Stick it to your pay caps and your fake pay-cap lifts.

Stick it Amazon and Starbucks and all you other skin-flint companies who dodge contributing to our children’s education and treatment of our sick through fair taxation.

Stick it Richard-offshore-Branson.

We got this. Us little folk, we got this.

Us on the ground doing the legwork; we’re going to foodbanks and we’re putting school uniforms onto credit cards and we’re not just about managing actually, but we got this. We are good people and we count and you know what? Us people, us little people, we are bloody brilliant.  


If you would like to donate to help Kate pay for cancer treatment please click here:

https://www.justgiving.com/crowdfunding/help-kate-kick-cancer?utm_id=2&utm_term=njP86VBeA

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