Dear Mr Johnson, Will I Receive A Fine For Following Your Shielding Advice? By Lisa Mulholland

I need some urgent clarification, well me and about 800,000 other people…

You revel in your’ vaccination success’. And are using this as some of the basis as to why you are opening schools fully from the 8th March 2021.

You have boldly claimed that all the clinically extremely vulnerable are now vaccinated or at least had their first vaccine dose. And it is true, that a large chunk of those who have already been vaccinated are of an age where their children are not likely at school age.

Yet on Thursday 18th February an extra 1.7 million people were added to the Shielded Patients List. I, unfortunately was added to the list due to multiple underlying health conditions that originally placed me in category, which at this current time that I write, was not eligible for the vaccination.

It’s a marvellous, groundbreaking, quick piece research that has produced the statistics to provide the basis to be able to do this. And for that I am grateful to now be a greater priority for vaccination and shielding support.

However out of that 1.7 million, there are 800,000 of those, like me, that have yet to be vaccinated, at the time I write this.

https://www.itv.com/news/2021-02-16/covid-17-million-more-people-told-to-shield-and-820000-moved-up-vaccine-priority-list

Presumably for a number of reasons that would have not made them eligible previously, such as age or vulnerability, perhaps they were not previously in any priority cohort at all. And if they are of a younger age, then they are more likely to have children of school age.

And so their children will be expected back into school. In just two weeks time, they will enter an environment with hundreds of other children containing the remnants of all of the social contact that hundreds of their parents have had, such as when they go to work or to the supermarket.

Will those 800,000 clinically extremely vulnerable new shielders be vaccinated in time? And even if they have their first dose by 8th March will it provide any protection by then?

And if so, doesn’t this go against the advice we have received which is that we should continue to shield until 31st March at the earliest?

How can it be that I am not allowed to go to a pharmacy, or supermarket yet I am allowed to drive my children and walk them up to the school gates and allow them to go into three separate schools, with three separate sets of school staff, three separate sets of school communities and mix with them? And then come home to me. Eat with me, hug me, share a house with me.

If I choose to follow your shielding advice to the letter (and not just the letter but in the very spirit the shielding advice was created: to protect myself and the NHS from covid 19) and I make a logical decision in keeping with that spirit to keep my children at home until I am allowed out of shielding, will I get fined?

It seems ludicrous that I could potentially get a fine for following government advice, but it also seems ludicrous that a phased return to school is not going to happen. After the scientific advisers have told you this needs to happen and after lessons learned from September 2020.

Please please allow us shielding parents with school aged children to have some flexibility about whether we let our children return. Let us decide whether or not to send them back without the worry of receiving a fine.

Please.

Our lives will depend on it.

COVID-19: What It Means For My Family As A Young, But Vulnerable Group By Lisa Mulholland

The media is saturated with scientific talk, statistics and projections regarding the Coronavirus COVID-19. It’s enough to give any reasonable person some anxiety at least.

The panic buying of hand sanitizer, toilet roll, cleaning products, tinned foods is out of control, with queues outside of shops before they open. Which is a major inconvenience for me as someone who needs these products in abundance due to being a carer for my 6 year old who is disabled and incontinent who myself has diabetes and needs to test my blood sugar levels when out and about.

We are constantly hearing about other countries going on lockdown. Which becomes scarier when it becomes our European neighbours; Italy, France, Spain, Ireland … as the fear intensifies we look to our leaders and the authorities for reassurance.

But instead we get the complete opposite.

Boris Johnson said “ Many of YOUR loved ones will die before their time”…..

I mean, have you ever heard anything like this?

Then he went on to discuss herd immunity. As if the numbers and statistics of the people that are going to die are just that. But the vulnerable and the elderly are real people.

And right now, I , along with millions more, feel like my life doesn’t really matter. I have diabetes, several heart conditions, a disability ( Ehlers Danlos Syndrome) that can sometimes trigger autoimmune responses called mast cell activation disorder and I have 3 children that have various disabilities.

I am considered a ‘high risk group’ when it comes to most things. I have routine flu jabs, I have medical exemption from prescription charges, but I do not know whether I am a high risk group for this new virus.

I have received zero instruction. Zero advice.

When I search for the advice ( as of today , this could change very quickly) it is very flimsy indeed. I kind of feel like the decision is being left up to me about how to proceed. I am not a medical expert and I think we as a nation, especially the vulnerable groups should be given more direction.

If I get a basic cold, my body can do really strange things. My mast cells( the cells that detect a threat or a virus and are meant to protect us) go into overdrive and start attacking everything. Once I had dry eyes, I rubbed it slightly. Within an hour I couldn’t see out of my left eye. I went to my GP who sent me to the emergency eye department. After a series of tests they said my body had gone into overdrive and given me an ulcer on my cornea! I didn’t even know this was possible. But this is how strange my condition is.

What could an unknown virus do?

Let alone the impact on the diabetes or my heart…

My 6 year old has autism, global delay and suspected epilepsy and he goes to a specialist school where some of the children have conditions like cystic fibrosis that mean they’re on oxygen tanks/ tube fed. Most of the children there (700 of them as it is from age 2-19) will have underlying health issues. They’ve not sent out any information as yet because our leadership, our government have clearly not thought about them in their containment or delay ‘strategy’.

And when the media states this virus doesn’t affect children, do they mean all children? My children have the same condition as me. My 10 year old gets a cold and then the next minute he has an infected hand or limb. What would be the implications for him?

Or did they think about them and decide that they are one of the “many loved ones” that we will “lose”.

My eldest autistic son’s specialist school has children with autism but a lot of them have comorbid underlying health issues and they have taken matters into their own hands advising us to keep the children home if they are anxious or have underlying health conditions. They said they won’t mark any absences during this period.

Part of me wants to be safe, then another part of me thinks if this is going to go on for months then I’m not sure what to do. Do I send them in now before the real danger hits? Or has it already hit but we don’t know because we aren’t routinely testing? These are rhetorical questions but the governments’ lack of direction is shocking and dangerous.

We are people and we have value. We matter and we want guidance now.

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!

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.

13 and Autistic: How Sensory Overload Feels For Me and Some Helpful Tips By Nathan Hillman

By Nathan Hillman

What is it like having autism? 

Well, what is autism? 

Autism is a spectrum condition that can make people hear and see the world differently to others without autism. 

Everyone has struggles in their daily life and autistic people especially struggle. I have autism and so do my two cousins (who will remain anonymous).

I can definitely say it does have its’ downsides. But not everything is bad about autism.

How do I feel in busy places with autism? 

Autism can affect people’s sensory processing and not everyone with autism are the same. 

Here is how it feels for me. “It feels like my head is going to explode” “My heart starts racing” and “My ear drums feel like they will pop.” My ears are very sensitive so I cannot stand it when my mum puts the hoover on. Autistic people can seem like they are being disrespectful but they are not, They can have meltdowns sometimes because of sensory overload.
Autism is just another word for ‘little sh** syndrome’… I have heard people say this but IT IS NOT! I hate it when people say that!! 

People with autism can have meltdowns but they cannot help it. I’m sorry but it is just the way they are, there is no cure but there are coping strategies that I would like to share:

Focus on your big toe. Sounds strange doesn’t it? Nope, when you focus and move you right toe, you are concentrating so hard on your toe that you cannot focus on your anxiety anymore.
Count to 10 and breathe. This is a common one, this does help a lot.

Exercise more often. It has been proven that exercise can release happy chemicals in your body, so do some yoga or go for a run!

Meditating. This is the second easiest one (as counting to 10 is the easiest) get a meditation CD or look up meditation music on youtube and just lay or sit up straight, and breathe…. easy right?

Eat a healthy and balanced diet. This can help with mood swings and depression as well.

I hope some of these help you!

There are certain materials I do not like and this is common with most autistic people. There are a lot of parents that get worried about their child having autism and the best advice I can give is to research autism and go see your GP for advice. 

Now onto the good things! 

Autistic people are very clever, I think that autistic people should follow their dreams and do what they want when they grow up. I want to help people, that’s why I am am writing this.

I hope I have helped some of you! 

For more information on autism please visit :

http://www.autism.org.uk/about/what-is/asd.aspx

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