Today class , we are going to make ‘parents of kiddies with special or extra needs’.
First, grab a partner, the opposite sex to you or the same sex, heck I don’t care, but you really could use two (or a team!) to help, support and guide you through this journey, ‘cos it ain’t plain sailing...but there is many a calm, peaceful sea ahead of you too, you may just have to look that little bit harder to see it.
Secondly the ‘fun’ part...wham bam thank you ma'am...or fill out a heap of papers go through countless hoops and adopt your beautiful baby/child!
Nine months later you have a baby (this may vary depending on personal circumstances)
A few months after that or years after that you hear the words, ‘extra needs’,‘special needs’,‘additional supports’ etc.
This is not what either of you had planned - you’ll soon discover, life in general is often not what you’d planned, for absolutely everyone, not just you!
Why the feck are doctors talking in letters at you? OT , SLT, PT, ABA, ADHD…
Don’t fret, I have figured out some ingredients you will need and the method you will need in order to decode, kick-ass and smile all through your particular journey of parenthood, ’cos we all know ; it takes a village to raise any child really!
Prep : ummhhh..well at least 9 months ...but this can vary depending on when your doctor starts talking to you about conditions, testing, gene testing , blood work etc...
Cook : ummhhh… I guess, if I’m honest: ongoing.
We aren't talking grams, or tablespoons here, it’s got to be buckets!
Buckets can be halved or even quartered when your child redesigned the walls, floors and bedding with their own special shade of brown (wink, wink)
*Do not, I repeat , DO NOT use all your buckets on this, you will need the rest (and probably have to borrow some from your friends) when dealing with schools, nurses, doctors, pharmacists, the general public and idiots which we all meet daily.
Bucket loads of ARROGANCE
Oh I know how that sounds, but come on YOU know your child better than anyone else and YOU are more than qualified to make decisions regarding their care, medications, education and their needs.
You will suddenly NOT take no for an answer when looking for supports (what ever they may be ) for your child. You will always get up again, more determined each time.
As Chumbawamba ( yep I am that old ) have so ‘eloquently sang’ - “I Get knocked down, but I get up again” - it’s not the classiest of anthems but it gets right to the point, eh?!
Bare with me here, you are Fionn and your child is the Salmon of knowledge.
YOU know all about your child's condition without a degree. Well done you eh?!
Oh yes it's a bad word, but you will use it over and over and over and over and over ...there comes a point when you will just decide to “Chuck it in the fuckit bucket and move on”.
This may apply to friends, relatives, teachers, SNA’s, pharmacists, doctors, nurses, supports, services and even personal hygiene (sorry to burst that bubble, newbies)
You will see the looks, you will hear the whispers. You’ll smile in response to that level of ignorance or you’ll act really inappropriately (I try, to do the second, as often as I can)
You will however feel so liberated by not giving a fiddlers as to what people think of you or your child. That my dear, is perspective working it’s magic on you all the time.
We all have access to these ingredients in an instant, especially if we see pretty much anyone struggling. We are those parents who approach you and ask if you need a hand ..yep that’s us..we think nothing of picking up your bags as your child ran off despite you pleading with them to wait. We just get it.
We’ve no idea if your child has any sort of extra needs, but we see a parent who needs an extra hand and in that second we will offer it, I like to think most people would do the same.
Trust me, if your kid kicks you and you get embarrassed we are secretly thinking ‘good block mammy’ or ‘ wow he’s got great balance with one leg’- we do our best not to judge, especially parents, as we have been there and been judged far too often.
You will laugh at stuff you shouldn’t laugh at and that is OK, we all do it .
Yes, yes..quiet down there PC club , let me explain our ‘club’ and it ain’t PC it’s more like PI (politically incorrect)
When you're with parents like me we will laugh our assess off at eachother's stories, we will ‘one-up’ each other with stories that would make the average parent cry, weep or vomit or thank the Lord above that they don’t live our lives.
This is fine but... and there's always a but. If you’re not in our club and you try it, we will give you a five minute head start ..run. We are fiercely protective of our babies and our club, for that matter.
Perspective can sneak up on you. You don’t even know you have a different perspective until the mundane life worries really go above your head.
You are too busy taping your child laughing, or walking, or talking.
You learn life is made up of moments, not of what you own or what car you drive or where you went on holiday.
But moments and if you’re lucky enough, you’ll have your child/children with you throughout your life to make many more.
All parents have this for their children...but with parents like us, this is what drives us to advocate, to speak up about inequalities within our communities, to want to change the world for our kiddies, to want our kiddies to be accepted and cherished within our communities.
It’s basically all the things any parent would want for their children, except most don’t have to fight for it, we do and we will continue to fight for our kiddies…
Over time throw all these buckets into your soul. Mix until there are enough worry lines, grey hairs and of course laughter lines - then leave to mature (hopefully a very long time) and voila!
You are an overworked, under appreciated, extremely tired, advocate, parent, carer for your child with extra needs.
The most amazing thing? You would not swap your child for the world but you'd change the world for your child.
The only real ingredient you need is love and to know that every single one of us, as soon as we hold our babies are very capable of being the parent that they need.
You’ve got this and when you don’t, reach out, there is a whole big community only waiting to help pick you back up.
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