Posted in Emotions, Open Letters

Prejudice

This started as an open letter but the more I have written the more I think it’s not, its ranty like a standard post so I’m unsure how to categorise it 🤷‍♀️

There are people out there who are prejudice against disabled children, people who may not be aware they are prejudice and some people that think it is acceptable to stereotype and judge without basing these feelings on facts or first-hand experience. There are many times in which William is judged like this and it is absolutely disgusting and genuinely makes me feel physically sick. Especially when it is by people that have in fact spent time with him no matter how little or how much.

There any many times William is purposely singled out and excluded from events and parties because of his disabilities. Sometimes this happens because people have misconceptions about him and his needs, these people are too arrogant or lazy to ask questions or educate themselves. Sometimes it happens for Williams own protection or comfort. As Williams Mom it is my job to advocate for him and make sure people around him understand him but if those people already have misconceptions about his needs, I cannot help. It isn’t just my job to advocate, it’s also his dad’s, both of our respective partners and anyone else who has a big part in William’s life. However, recently I am wondering if we have failed? Are we allowing people to make assumptions about William because we haven’t done enough? Is this a collective failure? Or a personal one to me? Or can you just not educate stupid people?

Believe it or not Williams needs do not have to limit him. William loves parties and events, actually let me clarify that, he loves cake, balloons, and the people he is closest to which tend to be a big part of all occasions. There are factors he may not cope with too well such as changes to his routine or loud noises but as his mom, I have learnt to handle this and how to neutralise (I’m not sure if this is the word I’m looking for) William’s discomfort and make situations more comfortable for him. However, it is not my responsibility to make other people more comfortable around him when they make no effort to understand him.

Your children will not catch William’s disabilities, in fact your child would learn to understand them and be accepting of all others and potentially have an understanding that I myself as a child did not have, in fact I didn’t have it up until my late 20’s. How brilliant would it be if this generation of children had a broader understanding of all disabilities, of people’s neurological differences and a better level of acceptance. Why would we not want our children to be better than we were?

Williams needs do not impact other children, William has needs in which are destructive to himself, not anyone else. I may have taken on occasion, a foot to the face, bite to the shoulder or thigh, but I am doing things in which he struggles with, administering medicine, changing his continence wear, stopping him from eating unsuitable items or restraining him to prevent him causing injury to himself. A child around William would never be in that position as there is no reason for them to be doing those things to him. Yet neurotypical children in the past have bitten or smacked William purely because he had a toy they wanted, or he wouldn’t play with them in a certain way or just because they could, but I do not judge those children based on this… Maybe I should? Maybe I should judge the parents?

William can be a handful, I can’t lie about that, nor would I want to but as he has grown, my ability and knowledge of his needs have too. Although there are a handful of people who know how to tend to his needs, the majority of the time, I am more than capable of doing this myself and its frankly downright insulting that people may think otherwise but don’t get me wrong, I do need a break sometimes but doesn’t any parent?

Having my child in your child’s life would not negatively impact your child in any way shape or form. William doesn’t show love as often as a neurotypical child or in the same ways, but he loves with all his heart and is hurt in the same manor in which other children may be hurt and I’m not talking physically.

I have spent time with neurotypical children who can be more of a handful than William due to things such as separation anxiety, over tiredness, being generally naughty or having tantrums because they can’t get their own way but let me translate these things into William’s versions.

He have never suffered from separation anxiety, as long as his needs are met, he is happy to be with his dad, myself or any other caregiver, no issue there because when he was younger, we made sure that he spent adequate time with everyone and didn’t solely rely on a single person as that would have created a straw for our own backs.

Over-tiredness? What is that? My kid can sleep through a tornado or have a house dropped on him and he would remain asleep. When he is tired, he will literally just go and lay down and go to sleep. Sometimes he doesn’t even make it to a bed or sofa and will sleep anywhere. Even if he has done this during the day he will happily be in his room from bedtime until he is tired. No fuss, no crying, no demands for attention or toys etc, although sometimes he gets both.

William can be naughty, all children can. He will touch the TV and laugh when he is told no. I will take his toy from him because its bedtime and he will duck under my arms and go back to grab it, but he doesn’t hit, scratch, nip or bite when he is naughty or mischievous like some other children do. I’m not saying it won’t happen in the future but in over 5 years it hasn’t happened yet.

Tantrums again fall into the category in which all kids can have them, William’s tantrums last seconds, when he realises, he isn’t immediately getting what he wants, he gets bored and walks away. Tantrum over. I have been around neurotypical children who can have a tantrum that can last hours. When I say tantrum, I mean tantrum. A meltdown is something completely different. A tantrum is purposeful behaviour in children and therefore can be shaped by rewarding desired behaviours, a bit like how you train a dog 🤣 whereas a meltdown is involuntary and cannot be stopped by rewarding the child or giving into demands because a meltdown doesn’t happen because he can’t get what he wants. Tantrums slowly go away as a child grows up (although some of my ex’s prove otherwise 😂), but meltdowns may never go away. If my child is having a meltdown, it is because he is pain, either physically or mentally not because he wants an ice-pop or something of the like.

Looking at these things in comparison, which child needs more attention? Should I be concerned about the neurotypical children in William’s life? Should I restrict access? There is only one answer, no. why? Because I’m not a cunt.

I don’t judge children based on their behaviour but maybe I should judge their parents? If that’s what people deem acceptable maybe I should jump on the bandwagon?

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Posted in Open Letters

A letter to my son

William,

1578 days, that is how long I have loved you, and that isn’t including the time I grew you inside of me, but I assure you; I loved you just as much then as I do now.
I have spent a total of 8 nights away from you, that’s only 0.5% of your life but from Saturday and until you start school, we will spend 28.5% of the week apart.

I would never have said a year ago, that I would be awake all night trying to comprehend these figures and telling myself that its going to be ok, that you will ok without me, that I will be ok without you.

I’ve spent almost 10 months thinking about how badly I need some time, ‘a break’ so to speak but I just wanted your dad to do his share because for the first four months through no fault of my own, you hated me. I could feel it and believe me, I didn’t like myself very much either at that point, but we got through it. The change in your routine blew everything apart, you struggled to eat, you lashed out and broke things, you cried, and I was beginning to think you didn’t know what sleep was but after 122 days; you slept. You slept in my arms after hitting me and yourself, but you slept, and it was a breakthrough or maybe a breakdown but you slowly got on board with your new routine and life got easier for both of us.

And here we are now, we have a good routine in place which is about to change once again and I don’t think either of us are ready for it but it has to happen.
I never wanted you to have two ‘part-time’ parents, two houses or any of the other things that comes with separation. I wanted stability for you, I know how much you need that but somethings are beyond our control, but I tried and I want you to know that, I tried… for you.

What if you need me and I’m not there? What if you seek me for comfort in a strange new environment and I’m not there? I cant always be there but I wish I could and I needed you to know this. You maybe don’t understand this now but when you are older and can maybe read this you will.

You are without a doubt, the best thing that’s ever happened to me, my greatest achievement and the love of my life. I wouldn’t be the person I am today had I not had you and I am forever grateful for you and everything you are.

I love you in the morning and in the afternoon, I love you in the evening and underneath the moon 🌙