What I wish I could have told my parents when I was first diagnosed





A letter to my parents - what I wish I could have told them a year ago


I hope you know that I don’t expect you to get everything right, this is new to both of us, and nobody is perfect.

There are going to be moments in the future which are going to push us both to our limits, but together we will find ways to get through them. It won’t be until we find ourselves in these situations that we realise how strong and capable we both really are.

I would be lying if these next few months are going to be easy. There’s going to be many changes which will bring an enormous amount of confusion to my life. In these times I just ask you to remain you and be who you’ve always been.

These changes will come naturally with feelings of guilt for the both of us. I really hope you know that you have done nothing wrong and none of this is your fault. I hope you know that it hurts me as much as it hurts you to know that your heart is breaking watching me struggle.

Over the next few months, I’m going to learn that its ok to be who I really am and show the side of me that no one has ever seen before. This is going to bring some change in behaviour and the ways in which I act. You might start to see a side of me that you’ve not seen before. This is because my whole life I’ve been masking but this diagnosis has now allowed me to show who I really am.

I want you to know that I don’t purposely choose to act in ways which might come across to other people as ‘weird’ and ‘challenging’. These are behaviours that I’ll learn in order to cope in difficult situations.

Your patience and ability to keep calm will soon start to make the difference between a difficult situation escalating or me being able to quietly calm down. There are going to be times where your patience is going to wear thin, but I ask you to please keep calm, it won’t make the situation any better by raising your voice or getting annoyed.

The future might bring some really tough situations, I’ll apologise now for all the hurt and tears that I’ll cause you. I don’t mean to cause such worry.

There are times where you’re going to find yourself having to drop things in order to come to my side, without knowing what state you’ll find me in. Sacrifices that are going to be made, plans that you’re going to turn down so that you can stay home and make sure I am ok instead - I hope you know that I appreciate every single one of these. On the other hand, I want you to know that sometimes you will need to ‘escape’ for a little while and have some time to yourself – by doing so you’re not letting me down.

I will find my safe place within school and will start to talk to some teachers about how I really feel. You’ll probably start to feel some guilt because you think I feel that I’m not able to speak to you. This is not true; I will find it hard to put how I’m feeling into words and find it easier to talk to teachers in school. This will change over time though when I find that I can express how I feel through writing and then I’ll be able to share with you some of my thoughts and feelings.

There’s a lot of understanding to be done over the next few months. I know that you’ll do your best to understand, but I also ask for you to accept that you’re never going to fully comprehend the way I see the world and what I need.

Most of all though, despite all these changes, I hope you’re able to remain you, because that’s all I really need. To hear the words ‘it’s all going to be ok’ at the end of every day. For you to be there to show me the way, letting me try and walk it by myself, but being ready to guide me when I get lost and don’t know the next path to take. 


 

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