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.

Why Today is A Day of Celebration and Victory For People With Invisible Disabilities By Lisa Mulholland

Today is a milestone for people with invisible illnesses and conditions. Today people with invisible disabilities are finally entitled to apply for a blue badge which entitle them to use the disability parking bays.

Until today you could only apply for one if you have a serious physical disability that impedes your ability to physically walk. But now from today, you can apply for one if you have autism, or another disability that is hidden.

For families like mine this is going to dramatically improve the quality of our lives.

That may seem like an extreme statement but please let me explain.

Days out with any children can be trying. But if like me you have two children with autism; every day events and days out can be dangerous.

My two boys react to noise. They have a heightened sense of hearing, no sense of danger, and an inability to predict circumstances.

We simply cannot travel on public transport.

There have been so many times that my eldest boy has nearly been run over, fell down the gap between a train and the platform, and had panic attacks in crowds.

When he was younger I used to commute into London to work. I’d have to drop him off to his childcare facility on the way. At this point I was unaware that he was autistic.

A common daily situation for us would be where we would get onto a train and then he would panic. He would run as soon as we got on the train and need to find a seat quickly. He had to sit down before the train doors made a beeping sound to indicate they were closing. For him that sound was frightening and deafening. So for him, if he was seated he felt more able to control his anxiety about it. He would still scream but he felt contained. It wasn’t always possible to get a seat and often the trains would be crowded, so his fight or flight response would kick in and he would either start lashing out at people or objects around him to get to the seat or run into danger to get off the train.

A common occurrence would be where in his moment of panic he was unable to see the large gap between the train and the platform, he wasn’t aware that he could fall down that gap, or get stuck on the platform alone.

Many times, kind strangers have saved him by grabbing hold of him and prevented him from falling down the gap.

Another time he ran out of the station and directly into the path of oncoming traffic. Another occasion he sat on the floor in the train station frozen to the spot, and I had to get a police officer who happened to be standing by, to help me carry him onto the train as he was too scared to board. We had to cover his ears and eyes and seat him.

The list of incidences likes this is endless and it would take a good few long blogs to list all the near misses we have had.

In the end I had to stop using public transport altogether. It was too dangerous and stressful. The panic attacks became more frequent and as my son grew in size, the general public were less accommodating .

A large 15 year old who is 5ft 10 tall is rather hard to ‘grab’ and he is difficult to manoeuvre. A child of this size who physically looks just like his neurotypical counterparts and starts behaving erratically is at best going to raise a few eyebrows and at worst is going to invite some very unwanted attention. Not to mention that it is embarrassing for him once his panic attack is over and he sees everyone staring, tutting or worse.

In the end he started to refuse to leave the house and had panic attacks every time he went outside. We were house bound for a long period of time and slowly developed a significantly lower quality of social life than other families with children of his age.

So with therapy and driving lessons I slowly started to claw my life back and I started to drive everywhere .

This made it slightly easier to attend days out. But only slightly.

Nowadays we park up as close as we can, and walk to the event or venue we want to attend. This still involves walking long distances, and heavy planning to keep him and his brother safe from the road.

The noises, lights from vehicles, hustle and bustle from surroundings and crowds can be painfully scary and triggering for my autistic children.

My youngest son is more severely autistic and is still in a buggy despite being 6 as he has global development delay and has the mind of a 2-3 year old. To complicate matters more I should note that I have an invisible condition called Ehlers Danlos Syndrome, which means (amongst many complicated problems) I can’t walk very far even on a good day.

Just yesterday we wanted to enjoy the summer holidays by going out into London for the day. I had to pay heavy parking fees to try and park closely to the place we visited. We parked as closely to the venue as we could, but it was still very dangerous.

And just last week I had to forego a festival due to a lack of parking. There was no parking near the festival except for disabled parking (which I wasn’t entitled to use last week) so I had to miss the event.

If I had a blue badge it would have meant that we could have parked closely and got the event safely. Instead I had to miss it and let down friends and family once again.

There are so many examples like the ones I’ve listed where as a family we have missed out on events due to not being able to drive or park there.

Over time it can really impact on levels of happiness, friendships ( people give up inviting you out if you have to cancel quite a bit), self esteem and ability to socialise: all of these things are so crucial to people in general to contribute to a healthy and happy life. For people with invisible illnesses and disabilities who already suffer from the various conditions and the limitations they bring, it is even more important that they can access events, and normal day to day things like shopping. It’s crucial that I am able to take my sons shopping to help teach them life skills, but more often than not it’s just not safe, or too stressful to do so.

But today, as I fill out my form for a blue badge and am able to tick the criteria that actually applies to us, I feel like a weight has been lifted. The possibilities for us to access the world have now increased infinitely and I am so happy I could cry.

I will be able to take my boys out on my own, without having to have another adult present, or having to worry about them walking into a moving vehicle just going to the shops. I won’t have to spend hours trying to find eligible parking and pay hefty fees or try and navigate a route that minimises the possibilities of meltdowns, or real danger to my kids.

Today I feel like our family’s disabilities are being recognised as real, and that it’s the first step to a wider acceptance of invisible illnesses as a whole.

The world is our oyster and I look forward to so many more adventures!

Why We Are Using “International Zebra Day” To Highlight A Rare Illness By Lisa Mulholland

31st January is “International Day of The Zebra” and the Ehlers Danlos Society is marking the day in a big way! They’ve asked Ehlers Danlos Syndrome sufferers like me to show our zebra stripes to raise awareness of the condition.

This blog post is my way of wearing my zebra stripes and showing solidarity to my fellow zebras, who include my friend Bev and her children.

You’re probably wondering what Ehlers Danlos Syndrome (or EDS for short) is and what on Earth it has to do with zebras… well don’t worry, you aren’t alone.

Most people and many medical professionals are unaware of the condition (although it is becoming more well known) which is exactly why we need a day of the zebra… still confused? Read on!

Back in the 1940s the medical profession coined a phrase to help its students diagnose conditions that they would likely face in their careers:

“When you hear hoofbeats, think of horses, not zebras”.

In other words look for the most common answers rather than something rare, like EDS! That is why the EDS community have chosen the zebra as their mascot.

This metaphor underlines the difficulties that we face when entering a doctors surgery or hospital, where we are often faced with professionals that are only looking for common conditions causing years of confusion and misdiagnoses.

So what is EDS?

EDS affects the collagen in your body. Collagen is best described as the glue that holds everything together. It’s in all your organs, muscles, ligaments, skin and soft tissue. Normally a person’s collagen is like a flexible but tough glue, allowing your body to function normally. However for an EDS sufferer it is more like stringy chewing gum, easily stretched and unable to support the body as it should.

Having EDS effects everyday bodily functions such as walking, writing and any impact activities. It effects your digestive system, your heart and other major organs.

There are currently around 10 different types of the condition. With vascular EDS which majorly affects the heart and veins; being the most severe form.

The problems associated with EDS are endless and confusing. This wonderful organisation explain further and help with research into the condition :https://www.ehlers-danlos.com/what-is-eds/

I was first diagnosed with this condition, four years ago, when I was 35 years old, after years of unusual medical problems that left doctors scratching their heads, including:

• Fainting for no obvious reason, with my heart rate plunging into the 30s (most people would be in the emergency department with this)

• Repeatedly dislocating my hip but also partially dislocating things like my knees with no trauma or obvious reason. Every single day.

• Not responding to local anaesthetic. My body just rejects it.

• Chipping my teeth or partially dislocating my jaw after doing something minor like eating an apple or a crusty roll.

This is just a tiny snippet. It really is unusual and seemingly endless.

Once when I was 5, a simple cold made my liver swell up and I was unable to move. I was rushed into hospital and the doctors suspected meningitis, tuberculosis and all sorts but ultimately I just randomly recovered and that was the end of that…. until I got my diagnosis of EDS . 30 years later…

Sat in the rheumatologist’s office after years of failed physio therapy attempts to stop my joints popping out of place, she fine tooth combed by entire medical history and then she explained “Everything is caused by your Ehlers Danlos Syndrome. Everything”

Even my heart defect. And even that one weird time when my uterus ruptured during my third and final cesearean section.

All weird. All seemingly unrelated and yet now I was being told that they were all related and all could be easily explained by EDS.

It was a shock. And it was strange and scary. And at that time, I knew no one with the same condition as me. Trying to explain it to people they would look at me like I had three heads. There’s been many times since my diagnosis where my own doctors have to google EDS as they don’t know what it is.

Finding others that have EDS has made my knowledge grow. Groups online have taught me so much about how to manage my condition on a day to day basis. The phrase “ knowledge is power” has never meant more to me than when I realised that I could prevent jaw dislocations by changing the way I eat. That a certain cushion could support me in my sleep and prevent a partial shoulder dislocation in my sleep… it really helped. It hasn’t solved the issues completely but it’s enabled me to have a small feeling of control over something that in the past I’d never had control over before.

So when my good friend’s child was faced with years of quite serious and debilitating illnesses, all seemingly unrelated, with numerous hospital stays and ongoing tests; I saw a familiar pattern emerge.

I recognised it all. Doctors were left scratching their heads over Ava’s medical problems until they finally diagnosed her with EDS at the young age of 8, and they then started to look at her little sister Bella and my friend. They were all diagnosed shortly after. And although it saddened me, it also filled me with hope that the medical profession was finally starting to think ‘zebras’ instead of ‘horses’ when presented with a child and her family with a series of medical problems. It also made me want to be able to help my friends and fellow zebras.

To help with giving them some power over their diagnosis, and to help make sense of it all.

When the Ehlers Danlos Society produced a book for children to help them deal with EDS, I just had to tell my friend. They explained it in such a lovely way and used the zebra and it’s beautiful rare stripes to bring a sense of pride and ownership over having a unique condition to life for children.

And so today, little Ava and her family, me and my children, and many other zebras will wear our stripes today.

And we hope that seeing our stripes will make you wonder and ask why the stripes? Why the zebra?

So that we can explain and spread awareness. And maybe that one day doctors and the medical profession will think differently and help diagnose us sooner.

Thank you to Beverley Smith for allowing me to tell part of your story.

Mandatory Reselection Aids Representation By Lily Madigan

For the uninitiated, mandatory reselection is the idea that Labour MPs should have to convince their local members to reselect them to run for parliament before every general election.

For some this is controversial but being an MP is an important role with a lot of responsibility and a big pay cheque to match. This shouldn’t be a factional issue, as it is so often framed, but a reflection of the very party these MPs claim to represent.

It is about meritocracy, democracy and the fundamental truth that we should have the best Labour members on our benches.

I hope I’m not alone in assuming these ‘best Labour members’ might just so happen to not be a group for the most part; comprised of old, white, cis straight men.

Young people are a perfect place to start.

Labour’s membership has surged since Corbyn became leader, bringing a new focus to the political power young people possess.

We are the activists on the ground doing door-to-door canvassing and leafleting, making a difference in marginal seats and university towns.

We saw ourselves represented in Labour’s 2017 manifesto that promised to abolish our tuition fees, fund our mental health services and create housing that we would have a hope of affording.

The political landscape has undoubtedly changed in our favour so why shouldn’t the makeup of our MPs?

The average age of an MP is 50, with only 14 (2%) aged 18–29, and the Labour Party having the most MPs over the age of 60.

It’s unsurprising just how badly we’ve had it politically when the reality is we are horribly outmatched. It’s essential the value we bring to our Party is recognised.

We will suffer most from the depredation capitalism has caused our environment.

It’s us who must endure the mistakes of the financial sector, rescued by mortgaging our future.

It’s the young who will live harder lives than our parents because of the neo-liberalism pedalled by the Tories and the last Labour government. We are disproportionately likely to be in unpaid internships, zero hours jobs, and when we can get a job we are paid less than older people for the same work.

We see a similar phenomena across other minority groups as well; women; those with disabilities; BAME and LGBT people, all suffer from a lack of representation in Parliament and would benefit from mandatory reselection.

The reality is the most secure seats will continue to be held by the same people unless something changes.

This lack of representation hinders the policies we create.

For example, a massive issue facing LGBT people is homelessness but without an adequate amount of LGBT people with voting privileges and a voice in Parliament, we receive inadequate consideration. This is worse at the intersections of groups, for example, disabled trans people suffer both from inadequate access to housing period, as well as a lack of accessible housing.

The reason we must fight so hard for tuition fees; affordable housing; decent jobs; and things like adequately funded mental health services, is because we are systematically underrepresented in the House of Commons.

Minority representation will transform British society, but we need to be on the benches and we need the chance to compete with other members for the limited number of seats within our party.

Mandatory reselection should be a priority for anyone passionate about increasing representation, not simply to meet a numbers game, but because with it the political priorities of this country will shift markedly in our favour — and ultimately, they will shift left.

Mental Health And Me By Lucy Robinson

At 17 I moved out of home. Within a year, my Dad & Step Mum who I previously lived with emigrated to Canada. My Mum lived in Wales. I was alone in London, with the world at my feet. I was ready.

…Or so I thought.

I bought a flat at 18, working in building maintenance. At 21 I fell pregnant; not ideal, unemployment and repossession ensued with me ending up – after lengthy process – in a Housing Association flat.

I refused to become a statistic of another single Mum on benefits.

Then in 1997 Labour got in to government – there was hope!

At this point I decided my career had to work for me. I went from working on a help desk in 1999 to managing engineers, to managing contracts. I did day release university and got qualified.

I started to manage bigger contracts, better contracts, profit margins increasing.

I was bold, brave and very good at my job.

In 10 years I went from part-time admin earning £10k to Projects Director in a multi-million pound engineering company, commanding a salary of £80k a year, managing literally hundreds of people.

I was now married with 3 children aged 13, 4 & 3. My stress levels were through the roof: I was being bullied at work (which most who knew couldn’t fathom) and my soul mate was dying of cancer.

It was a rollercoaster.

My soul mate died, work paid me off in a compromise agreement and then, just as I couldn’t get lower, my husband left.

It’s OK. I’m the breadwinner, I have child care, a cleaner, money… I can do this… NO.

No you can’t, not without a support network, which I didn’t have, I had opted for a career.

I was about to learn the hardest lesson.

I CAN’T DO IT ALL!

I lost 4 stone in as many weeks and never slept, apparently.

I have no recollection of 2011/12.

I still went to work every day, my kids were fed and clothed and attended school – in no small part thanks to my long-suffering teenager.

No one knew.

I saw not a cloud move, not a raindrop fall, didn’t taste or feel anything at all in this time.

I didn’t hear my children laugh or cry and from what I understand behind closed doors I was a vile ball of negativity and bitterness. I’ve no idea how my three beautiful babies coped while all I knew was blackness.

I sold my house, my beloved BMW convertible and got divorced. I started to regain what was missing and came to discover I was moving home.

I moved to Kent, I can’t quite tell you why; I do know rent was cheaper and I was born there which I assume took me back.

The moment I moved I could start to feel the ground under my feet (literally).

I saw I had an old ford Mondeo, my teenager was occupied as much as possible and we should all understand why, I saw my younger children cower from me and I was in so much physical pain it was hard to think.

I couldn’t fathom it… what was happening?

My hands didn’t work properly, I was physically sick most days and getting my children to school was a task. I had to have 4 operations: one on each wrist, one on my bladder and one on my throat. I had also gained a hiatus hernia and degenerative disc disease in my spine, not to mention the complex neurological disorder (nerve problems)…

But I’m bold and brave and very good at my job, I’m respected and established how could this happen?

My Doctor was incredible. I arrived gripping onto his desk, shaking, crying, scared and justifying that I was an intelligent, capable human being but I just needed help.

Please help me.

He did.

I went on antidepressants and got to know my children again. Did I mention autism? Yes we are an autism friendly family; not helpful if your Mum is having serious mental health issues.

I tried to go back to work, similar level but local on £60k. I couldn’t hack the pace, people were getting the better of me.

Tried again, still local but less responsibility on £40k.

I can’t EVEN do that.

It’s now 2015 I’ve moved twice and I am just going to have to finally admit I have mental health issues.

My spine is deteriorating, my children are not getting to school on time, my landlord might find out I’m not working and the school might find out I’m not coping.

Depression, anxiety, zero self-esteem and no support network… I’ve got to do this.

The school get involved, leading to a family conference with my family (now in Wales), my ex-husband’s family and my MENTAL HEALTH social worker, with me begging for help.

How does a bold brave person end up crawling so low. I’ll tell you…

By not taking care of the one organ which is bigger than you… your brain!

My landlord did find out I wasn’t working. I was still paying my £1145 a month rent in full but no, he wanted me out.

November 2015; 5 days before my youngest’s 9th birthday my three children and I were evicted, literally on the street. No temporary accommodation available locally, one North London and one in Harlow.

I emptied my home into a van and a garage I had rented. I find different places for all of us to stay.

Only two nights but two scary, lonely long nights.

I get a call. Erith. That’s somewhere I’ve heard of.

Another move but this time it means I’m in the system that offers help. A year later my family are offered a twee little 3 bed council house in the cutest of roads, garden, a downstairs bathroom to accommodate my disability.

I honestly couldn’t have been more grateful and slowly we start to heal.

So here I am in 2018, nearly another decade on from earning £80k with my BMW and two decades from refusing to be a single mum on benefits…

I AM a single Mum, on benefits with a disability to boot.

Would I have been better off with no career?

No, I loved almost every second of it.

Would I have stayed married?

No, I needed support.

Will I actively encourage people to look after their mental health?

EVERY SINGLE DAY!

I’m lucky. I am 43, once again with the world at my feet… it’s a blank canvas… now what is it I want to do?

By Lucy Robinson

No-one Today Should Be Caring Alone By Miriam Gwynne

By Miriam Gwynne

Middle aged man, commuting by train
Thoughts turn to his sister he left crying in pain
He’s off to a meeting, while she struggles at home
Both of them left to face it alone

Teenage mum struggling, pushing a chair
The child is yelling, people just stare
She is begging for help as she picks up the phone
She cares for her child, but does it alone

The couple at the cafe, sharing their tea
One of them lost yet no-one can see
He lives in the past, a mind not his own
Forgetting her name, they both grieve alone

The parents of a child, who may never walk
They sing to a baby who still can not talk
Kissing a hand, though it’s all skin and bone
Everyday precious, weeping alone

Little eight year old, should be out to play
Instead she is feeding her dad everyday
Doing his care as the nurses have shown
With no one to tell her she isn’t alone

The next door neighbour, bringing some meals
Staying and listening to ask how she feels
Filling out forms while letting her moan
Determined his friend should not feel alone

The father sitting at the hospital bed
Digesting the words that the doctor just said
A new diagnosis, his mind has been thrown
Needing support so he isn’t alone

So many people with stories to tell
Caring for others, and doing it well
Yet they all need support, to know they are not on their own
Because no-one today should be caring alone