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.

How you treat one percent of people really matters By Miriam Gwynne

According to The National Autistic Society around 1 percent of the population in the UK are autistic. That might seem like a tiny amount, and while I agree that it is very much a minority of people, I can not stress enough how important it is that one percent matters.

We are only every as strong as our weakest members and everyone is important.

At any point any one of us could find ourselves to be that 1 in 100 for any number of reasons.

Let’s put some of the struggles autistic children and adults face daily into perspective with other groups that are around 1 to 2 percent of the population too and see how important it is that we support everyone, even if they are only 1 in every 100.

Many people with autism face discrimination in employment.

Only 16 percent of autistic adults are in full time employment. Let’s look at that another way for a moment. Did you know that around 1-2% of the UK population have green eyes? What if only 16% of those with green eyes were in full time employment? I suspect that would make headline news, make the government concerned and initiate further research. Autistic people should count just as much as everyone with green eyes.

Many children with autism are denied the educational support they need to reach their full potential.

According to Department for Education figures for England there was a 35% increase between 2015 and 2016 in the number of local authority refusals to carry out EHC (Education and Health Care) needs assessments on children. Lets look at this another way: did you know that between 1 and 2 percent of the population have red hair? Imagine if a third of school pupils with red hair were refused the education support plan they needed ? Would we not be rightly angry about this? Autistic children count just as much as those with red hair. What are we doing to help these children?

Many children and adults with autism are bullied.

A recent survey in the United States found that 63% of children with autism reported being bullied, with many more unable to say due to communication difficulties. No-one should experience bullying but let’s put this in perspective again: 1 to 2 percent of the UK population are vegetarians. Imagine if two thirds of them consistently complained their were bullied because they were in a minority group? Why are we more respectful, tolerant and even accommodating of vegetarians than we are autistic people? How we treat one percent of the population really does matter.

Many children with autism are excluded from school.

The most recent national statistics show that, between 2010-14, there was a 35% increase in the number of autistic pupils excluded for a fixed period and the number of pupils permanently excluded has doubled over the last three years. What if we took another group of people who happen to be in the 1-2% in Britain and used the same statistics? What if there was a 35 percent increase in people with celiac disease excluded for a fixed period from school? Yes they are very different conditions but they both represent a similar percentage of the population. Autistic people deserve the same support as those with celiac disease.

People with autism often face sensory issues that make daily life a struggle.

Thankfully we are getting more aware of this through campaigns such as the too much information campaign by the National Autistic society and seeing an increase in autism friendly shopping times and businesses making accommodations.

A similar proportion of the UK population have food allergies and, of course, despite them only being around 1-2% of the population we are, as a society, accepting the seriousness and concerns they face and starting to address this too in the form of clearer packaging and better understanding.

My point is that everyone matters.

I am not autistic but my children are. They may be in just 1-2% of the population but so could anyone of us if we look at different things like hair colour, medical conditions, blood groups, income or any number of other factors.

1% matters. 1% of nuts in a recipe could kill someone.

1% of your house collapsing could be fatal if it was in a supporting place.

1% battery in your phone may be enough to dial 999 and save your life.

1% is important. How we treat 1% of our population matters so much.

For the sake of my children and all those others in the 1 to 2 percent of the population who are autistic please respect everyone and support autistic people to lead the best and most productive lives they can.

Everyone matters. In fact the less a percentage perhaps matter even more because it makes it different, unique and special, exactly like my children are.

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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