Updated: Jan 13
Throw away the throwaway comments…
We have all had them, heard them, received them by message…
“If you need me, I’m just a call away”
“If you’re struggling just shout”
“You don’t have to do it alone”
“We will go for a catch up and cuppa and you can fill me in”
“Don’t worry man, it will all figure itself out in the end”
“Have you tried….”
“You need a night off…”
“Can you not just…”
Each one of these is said with good intention. They are appreciated but not as helpful as they seem. We surprisingly don’t need as much as you think, we adapt and that adaption comes because help didn’t come, which is ok.
Friendships, relationships etc are really difficult to maintain when you have a child with additional needs for many reasons. Obviously, there is the initial breakdown of communication. You don’t understand my world now, you’re unsure what to say, how to say it or even if you should approach the subject. So instead, throwaway comments are made. You got tired of me cancelling, and I got tired of making excuses.
Our stories weren’t similar anymore, where we both once on the path to have a regular episode of ‘modern family’ type of life, my life swiftly turned into a series of the walking dead that hasn’t been cancelled because it’s just such good f**king edge of your seat stuff.
You will at some point think I whine too much, that my life can’t be as bad as it seems, I must be over exaggerating - I can’t stress this enough - I wasn’t. I will at some point think you have no idea what real struggles are, what a real sleepless night is and how it really feels to worry about your Childs mystery illness.I never wanted sympathy or pity, just a listening ear. I knew you didn’t understand, I didn’t expect you to, I didn’t even understand! Neither of us were wrong to think those thoughts, they were natural thoughts that come. I would be lying if I said I have never judged someone, that I didn’t think someone could have done better and no doubt there will be someone who thinks that of me too.
Our conversations dried up over the years, they dwindled down to Facebook friendships, where every now and again we have a social interaction because something resonated with us both. I’ll post a picture celebrating a small victory, where you will share your child’s first steps, words and more… ill be secretly jealous but like your post all the same. You’ll love my post, and scroll on.
I don’t blame you, for those comments. I do it, all the time actually - it’s just easier isn’t it? To make a polite comment and not think about it.
It’s better than me responding “look, I know and you know we aren’t gonna chat, you aren’t gonna come watch my kids - especially Delilah. You don’t know what to say and that’s ok, just don’t say anything”.
Instead I will say “yea lets meet up! Aww it has been forever hasn’t it? Yea, we are coping well, just cracking on as you do!”… The first comment makes me sound harsh and I don’t mean to sound that way but this life changes you. The passing comments and people you had time for become less important, you crave peace and quiet, less trouble and hassle. And it’s lonely, life becomes lonely. Before you realise it you have woken up into a world where you barely speak to anyone, you have acquaintances over friends and you still continue to crack on.
So if you are reading this as ‘the friend’ or family member to a parent/carer, read below.
If you want to help your SEND parent/carer friend, don’t say, don’t promise, just do. We become stubborn, we won’t ask for help because we learn some things can’t be helped. We won’t take you up on your offer because we won’t admit defeat. Admitting to struggling has an extra weight behind it when said by a SEND parent I believe, because we don’t say it often. Yes, we say we are sick, exhausted, we can’t take much more but spoiler alert… we do take more, so, so much more than we probably should to be honest.
Help by being there, listening and nodding. Learn my child’s condition(s), not in depth because trust me even the professionals haven’t - but ask me, google it even. Offer support on days out, to carry bags and lift wheels - I’ll never turn you down. Offer to stop by for a cuppa when I’ve gone quiet, or send a random text or gif so that I know you’re just there, when I’m ready. Don’t give up on us, we are still ‘us’ - kinda. We have changed, of course we have. We are more stubborn, more defeated but equally stronger than both of those combined. I’m still here, the girl/woman you once knew… just a little battered and bruised but still here. I don’t need saving, I’m superwoman, haven’t you heard? I just need a friend, a lending hand once in a while and a listening ear - that’s all. Tracey