On March 23rd 2020 the UK was put on LOCKDOWN due to coronavirus and death rates rising. For many families in the UK living with someone with Autism this brought lots of anxiety and dread. How would we cope with no routine? How can we get the specific food we eat? A lot of questions went flying around the community. I even seen a mother angry and upset because people where stockpiling the food her son ONLY eats!

Stockpiling became a big issue across the country, Basic items such as toilet paper became impossible to buy! It is now 1st May amd it has calmed down a lot since then and people aren’t being so selfish.

But how are we coping with being in lockdown? Well we aren’t, this situation is completely unpredictable and for those on the spectrum we find this hard! We love routine and predictability and right now during this pandemic we don’t have either. Yes we are in familiar environment but our favourite places are closed, our therapists are working from home, everything that was planned in advance is cancelled. The government didn’t even provide resources or put any adequate support in place for us.

This has left many families struggling.

It seems to be much easier to drug us up on anti-anxiety and sleep medications than actually put adequate support in place. Pharmacies are stretched and struggling, but if we can’t get these types of medications we will fall through the cracks further.

The government released an update on exercise during covid-19 recently which states if you or someone you live with is on the spectrum they can travel outwith their local area and exercise when needed as long as abided by the social distancing rules. This relieved a lot of parents and young people we didn’t feel as trapped but we still had questioning from police and other authorities. The National Autistic Society are currently managing this issue and hopes to liaise with police regarding these issues.

So what are we doing at home? Well playing games working through worksheets of various different topics, continuing to learn new things, I have been using abc mouse, as well as makaton free resources and many others.

Remember that nothing lasts forever and things will pass.

STAY HOME – SAVE LIVES – PROTECT THE NHS

 A lovely lady called Marie from ‘Sew Huggable’ sent me a weighted blanket to review. And from the moment i picked it up i was super impressed. Its a large red fluffy weighted blanket which is totally ideal for the next few winter months.

There are studies shown that weighted blankets or weighted therapy helps people with conditions such as: Autism, ADHD, Learning Disabilities, PTSD, Stress and so many other conditions. Lately i have noticed that as soon as the label ‘Disabilities’ or ‘Special Needs’ is put on to a selling item the price shoots through the roof. Marie at ‘Sew Huggable’ tries to limit that as much as possible and helps by making sure you get everything your looking for, nothing is too big or too small a job for Marie which is something i really admire her for.

Growing up on the spectrum can be hard with so many ups and downs sometimes we just want to hide Away from the world! Thats where weighted blankets come in!

I had just came back from a hard morning at physiotherapy i needed a nap! As soon as i had thrown the blanket over me i was out for the count for a good hour or so.

I am on 6 mg of melatonin each night to help me sleep i hope one day i will be able to sleep without medication and I’m hoping this is something the weighted Blanket can help with.

  Make sure to give Marie A Message she will help as much as she can to ensure the best and high standard service. It has been a pleasure reviewing this product and i wish to keep everyone updated on how i get on! I hope one day in the future i can become a brand ambassador for ‘Sew Huggable’ So i can help spread awareness of how much Weighted Therapy helps!

If you wish for me to review one of your items please get in touch!

 

Chloe 🙂

I’ve been in and out of hospitals like a yo yo lately, Asthma attacks, Low blood pressure and blood sugar it is an endless list. Something i have noticed the past few times is health care professionals aren’t equipped with the appropriate resources to support people with disabilities when they are Unwell.

When i was having an Asthma attack i was non verbal, too breathless to speak. I attempted to use Makaton (A sign language used with spoken words for people with disabilities) to my boyfriend who knew very basic makaton. The paramedics didn’t have a clue and nor did any nurses or doctors. If it wasn’t for my AAC software i wouldn’t have been able to tell them what happened or how i felt.

Hospitals in general have bright lights, funny smells, noises, rather funny machines, it can all get too much. I don’t like how they can’t accomodate a dark room within departments such as A&E when we are made wait for 5+ hours. A simple accomodation like that can go a long way for us but i can understand the NHS is very stretched enough as it is.

Since being home i have been better with things flaring up now and then but it is all about finding the balance.

Stay Strong and Positive – You Are Worth it – Chloe 🙂

Since being diagnosed with Autism last year i have always asked my self questions like why did it take 16 years to get a diagnosis? What would my life have looked like if i was diagnosed in my early childhood. Nobody knows the exact answers to these questions and sometimes i wish someone did.

I came across this picture after looking through some old pictures of my younger years and came across this one. I asked my sister why i looked so upset and she responded with “You didn’t like Grass” Now with a diagnosis of Autism i understand why i didn’t. But what is so frustrating is that i showed a lot of signs of being on the Autism spectrum as an infant but it went unrecognized or my parents were told i would ‘grow out of it’

I remember in primary school i would mimic what my classmates would do so if one of them started crying i would mimic it. I never really had any friends growing up well not real ones. But most times i preferred it that way and to be fair i still do. Because with friendships there are too many rules of do’s and don’ts to much drama i can’t really keep up with.

When i was about toddler age i loved anything that flashed up light up shoes, wands i even had a bubble tube! I would go through obsessions for a while it was peppa pig! And then Hannah Montana etc.

I struggled significantly in School and i never had the right support package either. Unfortunately in Scotland they don’t do EHCP or any legal documents like that which can be frustrating. But it is the LAW to put things in place for a young person or child with SEN.

Mainstream services have definitely failed me and it leaves me worrying about my future. Will i have a job? Car? Family? I guess no one knows but what i do know is that this world we live in isn’t built for people like me we view the world in a completely different way to everyone else and sometimes that can be scary its like neurotypicals are on planet earth but the Atypicals are on planet mars (I am just using this as an example)

We don’t think the same way i guess is what im trying to say, the way we view the world is different to a neurotypical.

Unfortunately we are still having to fight for support and advocate for ourselves and although we may not have amazing communication skills we still have voices that need to be heard!

AUTISM DOESN’T DEFINE US WE DEFINE AUTISM!

School is somewhere I dreaded going every day. I would have meltdowns every morning and night at the thought of having to go to school. My parents spent several times on the phone to teachers to try come up with a plan but all attempts failed.

 I was bullied rather severely through school, it got so bad pretty much all of my class was against me. I had a 10th birthday party my parent’s paid a lot of money for. I invited my whole class and friends and family from home. They all turned up! But no one apart from family and friends from home danced with me or interacted with me. Instead they sat in a booth texting and complaining my party was ‘crap’. My ‘BEST FRIEND’ at the time said that ‘Her mum forced her to come to the party’ You can imagine the sadness i felt hearing that.

My mum decided to move me schools. But things weren’t improving. I was still being bullied i was labelled ‘weird’ The mainstream school i was in refused to put me in the SEN class but i was lucky to even get support once a week for Maths!

I moved on to high school and tried to make friends with someone popular and was then called names constantly. The support was better but the pupils weren’t nice. I remember my mum going to the school to speak to my head of house about the bullying and when we finally got a hold of the head of house she told my mum ‘I don’t have time for this’ My mum put a complaint in to the rector and she received no apology!

I moved again due to moving house and it took me 2 months to even enroll to the school because they claimed they were getting me ‘the right support’ Well when i actually started there there was no support.

My mum went to the school endlessly to get me the right help. I was accused of ‘truanting’ when i was at a hospital appointment. My mum knew this had to stop!

Sadly my mum passed away in 2016 and my behavior snowballed i was excluded for refusing to leave a class telling the teacher to stop talking to me. I was constantly put into isolation for just being overwhelmed but they seen it as ‘Being Bad’

My dad met someone so i was moved schools AGAIN.

The first week went well and then everything went bad again. I stopped going to classes i couldn’t cope with the overwhelming environment. I sat in the nurture base all day.

Anytime i was in class i would walk out or be sent out for hiding under tables.

It got so bad the only time i went to class was when i had my 1-1 support 2 days a week!

I was due to sit N5 english and Biology. And i knew and studied hard for it. To be told i couldn’t sit my exams.

I was sent home hours before school finished on several occasions. Whenever i had a meltdown i was sent home when there was NO ONE HOME!

Eventually in January 2018 i was suspended. For having a meltdown i wasn’t violent in any way i simply put my fingers in my ears and rocked when they asked me to leave.

11 MONTHS LATER I WAS DIAGNOSED WITH AUTISM SPECTRUM DISORDER!

The School doesn’t know they don’t need to! All that matter is that i wouldn’t be where i was now without the right help and support.

The system has failed not only me but many other females that go undiagnosed or misdiagnosed with Autism. And i will do everything in my power to advocate for those the system has failed.

Dear Super Nurse,

I wanted to write you this to say thank you,

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You spoke to me everyday over the phone to check in with me to make sure i was doing okay.  

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You gave me a shoulder to cry on and a hug when i needed it.

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You gave me the answer to why i had so many difficulties and provided me with strategies to help me overcome them.

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You held my hand when i felt i was walking through the dark alone.

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You have always been patient.

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You are hilarious and can make anyone laugh.

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You also tell me off when i am making wrong choices.

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You didn’t get mad or angry when i asked for 10+ fist bumps before you left. Or when i had a meltdown at the end of our sessions.

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Instead you stayed calm and let me know that you where there and wasn’t moving.

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For this i thank you for being more than a nurse but a role model who has taught me a lot about myself and the world around me.

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You will forever hold a special place in my heart and i hope that when your going through a tough time you can think of me and you smile and know how much you have helped me.

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Lots of love and high fives 

Your Ausome Patient 

Chloe 🙂

I remember always thinking why am i not doing what everyone else my age is doing, why aren’t i into the same things my friends or relatives are. The list goes on! It wasn’t until i got to school did i actually realize i was a little different.

I would copy what my classmates did if one was crying i would mimic it.

I was told repeatedly your’e not autistic you can’t be you can communicate fine. You can achieve awards and pass assessments etc.

I remember being told i was autistic and i remember the pain i felt after that meeting my head was thumping, i woke up at 2am crying for no reason. The only way i can describe the feeling is kind of a punch to the stomach your’e never quite prepared for news like being told you have autism.

6 months down the line im doing so well! Iv’e got more support than i have got in my life. And it just shows how much iv’e been failed by the system.

Don’t get me wrong i have a long way to go yet and i still have hurdles to jump but i will get there and i will win.

Autism won’t define me, I define Autism

Chloe 🙂