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As a parent I do quite often feel isolated.

I’ll get straight to it, I’m not being rude when I have to get up and leave a social setting with my kids with no warning, I’m saving my child from a potential meltdown that is arising if it not already rose, I am saving them from the embarrassment of everyone watching them through this turmoil, I’m saving myself from being judged and talked about, not that I even care about being judged or being talked about but what I am bothered about is protecting the energy I have left that needs to go on my children, not explaining that my children are not naughty but actually have a development delay that affects almost 750,000 people in the UK alone.

 

Considering we are in 2020 times really have not changed that much, some people are not happy that individuals with invisible disabilities are entitled to a blue badge, leaving care givers in a vulnerable position and being approached whilst at the parking bay and being quizzed as to why they are parked there in the first place and then being told that autism isn’t a disability, in the end you kind of just give up going out altogether. It is hard enough getting our children out the door in a world that is so instructed and scary for them we need to be on top form the be able to help them get through the process of doing such a ‘normal’ day to day thing that many take for granted, the last thing we need is being deflated by judgement as we go about our own business.

 

Social settings- soft play areas, parks, swimming pools (if you’re lucky) are just torture from start to finish, the noise is a trigger from the offset and if it is busy it is just to over stimulating, it’s great to take the kids to burn off some energy and let them run around until they tire but the anxiety a parent of a child with additional needs if rife and unless you are In that position it’s hard to explain the constant feeling of being on pins and walking on a floor that feels like egg shells. Although a parent will a child who has a child with no development delay may feel like we don’t or shouldn’t need to feel like that, we do. We know that the minute our child does something out of the ‘Norm’ all eyes are on us, and to be honest I’m fed up of feeling like I’m living in a fish bowl when all I am trying to do is allow my child the rights to play and socialise in their own way that makes them feel comfortable, yes people say rise above the judgement but we should be subjected to it in the first place, again, we end up avoiding these places and life really starts to become restricting from us.

 

The worst ones are gatherings that you’ve been invited too, like a party celebration or just a general gathering, and not because of any judgement you may face because the chances are you’ve been invited because the person knows you and you are family on a different level, but when you have to abruptly leave with no warning and then find yourself feeling like you have to explain yourself later on (even though the person probably doesn’t expect an explanation) you just feel like it is the polite thing to do.

 

After all this battling when all you have tried to do is live your life as normal and comfortably as possible for your children, your precious energy is already used up and your patience is only spared for your children. I don’t know about you but I find that summer time is our worst time and we really confined to our garden, yet at the same time we love it because put up our pool and we don’t have to worry about any judgement, we come and go as we please, it’s okay to have a meltdown and we deal with it in their own time, nothing is rushed, there is no pressure, our home is our safe place and sometimes our home is the only things that protects us the most the second we close the front door,

 

I wish things where easier, I’ve cried many of times in the car whilst the children are asleep because my heart hurts for them and because I’m tired but as optimistic as I try to be about raising autism awareness the truth is that you’ll always find that one person who feels it’s vital to judge if you differ to them somehow. If I have one wish for 2020 is that people just say ‘It’s ok, it’s going to be okay, you do what you’ve got to do’ Rather than quizzing and questioning us like we are up for trial. I am a good mother to my children, I love them more than anything and I provide for them, I'm doing my best with the cards that I have been dealt just like every other parent out there who has a child with a disability hidden or not, we are ploughing throw when the days are hard and the nights are long and lonely, we cry in silence and reface what we need to with a smile and would never know how sad we actually feel or how lonely we actually are, we ask people if they are okay because we don't want them to feel how we do so we make the extra effort no matter what is thrown at us, we never give up and trust me we are kicked down a lot, but that is what makes us special kind of people, the compassion we carry for others instead of coming selfish and wallowing in self pity and indulgence and the irony is beautifully imperfect, don't ever change and try not to let the world change you.  

Stay blessed and healthy.

 

Rach. X


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