• Rach Williams

World Autism week amongst this pandemic?

World Autism week is approaching but for many families this week doesn’t necessarily mean anything because we live it 24/7 365. Whilst this pandemic crisis is going on across the globe I often sit and wonder if people who go about their day to day lives as normal with no problems are taking a moment to spare a thought for those who have life limiting disabilities and wonder how they live like this day in and day out. I have got to be brutally honest, this lockdown here in the UK has not really affected me and my family, I feel like we have been practising this ever since our eldest was born, he is now 6.

As a family we have always been very restricted as to where we can go, who we can have in the house, what foods to buy and so on, so let me explain and make this as clear as possible. As a family with children with different significant needs we don’t have the luxury of just deciding to go out (even with preparation, visual aids, routine chart, PECs etc) going to a soft play centre could possibly do more harm than good sometimes, both to child and parent, if it’s too busy, too loud, our children tend to become over stimulated, experience sensory overload, triggering a meltdown that may or may not lead to violence sadly, the demand of putting on shoes ready to transition to leave to go home or where ever to next can also be very distressing, and as for us parents, 95% of the time whilst your trying to comfort your child and prevent further upset, a worsened meltdown we are always battling judgement form someone, sniggering, staring or if someone is just stupid enough to approach to (and trust me they do) your now being quizzed and answering questions like “What is wrong with your child?” and when you elaborate your faced with “Well they don’t look Autistic”- Thanks. The same goes for other public areas such as swimming pools, parks, theme parks, farms, you name it. So for us, being confined to our house and making as much use out of our garden is our normal anyway just as going for a walk in the woods or down the canal, quiet and out the way of people (and by that I mean way more than just 2ft!)

Our children tend to be very limited on food they can eat whether that is because of a specific diet they need to consume or foods they need to avoid for medical reasons or if the child/individual has sensory issues, for those who aren’t familiar with Autism you may or may not have heard that many like to eat a beige food diet, it’s probably one of THE most common traits associated with an Autism Spectrum Disorder, so whilst people are panic buying are you bearing this in mind? Probably not and it’s really frustrating and stressful for the parent/care giver, However, not going to the shops very often is something we too are extremely used too but is the thought spared for us and other struggling families and individuals?

Not having people come over to our house is also another thing we are quite used to, in the first years of finding out our eldest has Autism at the age of 2 (he is 6 now) friends slowly drifted away, thankfully because those are the people you don’t need in life. They couldn’t wrap their heads around the fact that we couldn’t just get up and go on days out, or that sometimes we would have to abruptly leave because we could understand the unspoken language of our non-verbal child and know that shit was about to hit the fan and the sake of our child we needed to help him, he may have autism but he is still human, and if a situation or a place is to overwhelming then he deserves to have that meltdown away from people (if only we could do this all the time) He too feels things and I never wanted him to feel ashamed once he came around from the meltdown and feel ashamed of who is, as an adult if I felt like things were becoming too much I would get up and go too, so my child bared no excuse, if that cost me the restriction of going places and socially interacting then so be it, my child comes first and I knew this wasn’t going to last forever, so I made the sacrifice and slowly and surely people stopped coming over. When pregnant I would have to have pictures up of the midwives if they were coming to the house for an appointment so that my child(ren) didn’t get startled or feel a certain way in their own safe space, so this lock down and social distancing I feel like we are almost pro’s at. But do those people who no longer speak to me, confined in their four walls sit and think ‘I know how they must feel now’ because as humans we have this tendency to not really understand a situation of another person until we are in their shoes ourselves.

If this pandemic teaches us anything I hope it teaches us this, we are very fortunate to go asleep and have a roof over our head and share that with the people we love the most, whilst the government have now forced us to stop and spend time with each other make the most of it, tell people you love them a million times a day because who knows when it will be your last? Enjoy the little things and realise that you don’t need the fancy things in life to be happy, because when this virus goes (and hopefully that is soon) we will be glad we survived it, not upset that we missed out on a holiday, didn’t buy a new car, missed out on buying the dream house, but thankful that we are safe, with our health intact surrounded by our loved ones mindful that we should look out or vulnerable people a little more often than what he have been.

Stay safe, stay happy, stay mindful and happy autism awareness week.

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