1. We are are not Superheroes! We hate it when people say, 'we don't know how you do it'
We don't want to hate it, but we do, we want to take it as the compliment you meant to deliver it with, but we can't. We weren't born with a cape! We don't spin in telephone box's and come out in hot pants and a crown… in fact we are juggling so much we sometimes feel we may go under; we are normal everyday parents like you – no special powers here!
2. We are scared of what each day may bring, but we are fantastic at not showing it!
We are masters of smiles and control, we ooze calmness, that meltdown is no problem we smile while we get punched kicked and stared at! We compose ourselves and ignore the stares – like you don't exist – but we see you! And it hurts, if we were truly truthful we worry about what the future holds for us every day – we wake up wondering what the hell will today bring and have I got the energy to see it through! We worry about not being immortal!this keeps us up at night – who will look after them – who will love them and make sure they have everything they need like I do – it's a terrifying thought and one we have on a daily basis and gives us many sleepless nights! If only we could live forever!
3. We hate being called mum or dad in meetings!
OMG JUST STOP! Do professionals not realise how de-empowering that is and how patronising we feel when sat in a meeting and addressed as mum or dad! It totally disrespects the knowledge we bring to the table! We know our stuff; we are more than just 'mum/dad' treat us with respect and use our knowledge! Please call us by our name!
4. We also only have 24 hours in a day
I sometimes feel people think once you have a child with autism or special needs they come with a 48hr day instead of 24! Do you? All of a sudden we have a million appointments, GP, Paediatrician, speech and language, OT, behavioural therapy, assessments etc and from those appointments we get lots of strategies and tasks to do – it's us that have to do them all – fit them all in, they will see how we get on in 3 months! Add that to the forms we need to fill in to request services or funds and that's before being a parent! Ohhh don't forget to add on the medical procedures, medications, homework, school meetings, LA meetings and EHCP meetings – IT'S A VERY LONG DAY! Is it time to cook tea yet!
5. We are sometime envious
We don't want to be; but we are. Of your dance groups, swimming and holiday clubs, while we struggle to find somewhere our children are accepted and have the right staff to take care of our children safely, we are envious of your freedom to relax, to get a simple babysitter without a million qualifications in SEND and that doesn't cost more than your meal out! We can be envious when you can meet with friends and chat about random things. We can't always have that, so although we are happy for you we are hoping it may be us one day! We also struggle when the invitations stop, we get asked to many things but often we can't go or we have to cancel, but just being invited means the world to us – when those stop the heart hurts a little – we get over it, but we still feel it!
6. We don't want your advice!
Advice from those that do not understand our kids is pointless, please don't do it, 'he'll eat when he's hungry' if only it was that simple! 'he needs to be disciplined more' oh really so we should punish him for trying to communicate his needs? 'she needs to stop doing that' great thanks for that that's really helpful! we'll start tomorrow! You know what I'm saying, I can feel you rolling your eyes with me! If you have real supportive help that work's and you have understanding, great – if not just a hug will do – now that will be welcome!
7. We are very different behind closed doors!
We are masters of the mask! Once we close the door we can crumble. Often we wait until we have settled our children and then we have a cry! We cry for the struggles, for our children's future, we cry about finding tutors, about the next meeting, or because we are just so exhausted, we cry because that meltdown was hard and we are more than aware, if it was hard for us, it was 1000 times harder for our kid – that's not easy to digest – no parent wants that for their child. We take our time to cry and then we mask back up and crack on – but what you see is not always the truth.
8. We absolutely love our child with needs
We want your understanding and acceptance, not your pity, we don't need that! Our children are amazing, and we absolutely love the bones of them, that should never be questioned! It's the watching our children struggle, the fighting for support and schooling and just getting their needs met that's frustrating, tiring and damn right annoying, the system is broken that's what leaves us broken! that's what makes us grey! Not our children.
9. Stop dissecting our kids!
The system dissects our children on every level while we understand they need to prove need when assessing or discussing diagnosis and needs, but our children are torn apart – often in front of them too – they listen from a young age about everything they can't do, just stop doing that! no wonder autistic children and young people can suffer with lack of confidence and mental health when they hear this from such a young age! It's so hard for our young people when the system requires their dissection to prove their difficulties in order to get the support they need.
10. Don't say: "You should really make time for yourself. You need to relax. Maybe schedule a massage? "
Life can be incredibly overwhelming. We would love to take time to ourselves, that would be incredible, we know you mean well, because it's true we do need 'me' time but to be 100% honest that sometimes, as the parent of a child with autism, it's just not realistic, so maybe instead of telling us we need to take time out, maybe offer, you can say 'hey anytime you need time out I'm happy to babysit or take them out to the park or have them at mine or come to yours!' Don't wait for us to ask – it makes us feel like a burden, sometimes it's nice to offer as though you want to do it rather than us asking if that's ok, we would really appreciate it and it would really make a difference to us all as a family.
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