I doubt anyone’s parenting journey is the one that they envisaged when they counted down the weeks on their pregnancy app, filled with those eagerly awaited fruit and veg. But when your child has disabilities you have to disregard those annoying milestone emails all together, forget that dreaded red book that the Health Visitor handed you and well, quite frankly wing it, following your own child’s pace and family’s new path.
There are so many things that I’ve learned in the five years that our son Brody has been in our lives. Although there have been more good times than bad, a lot of things I’ve learned have chipped away at me. Not because of him. He is perfectly imperfect after all. Simply because of the way the world works – people, businesses – and my non-stop worrying mum brain.
If you’re new to the world of parenting and you’re wearing similar shoes (Brody has no primary diagnosis, epilepsy, autism and some mobility problems), then this is what I’ve learned so far.
There Is So Much Happiness In Finding Members Of The Tribe
Those friends who walk similar paths are worth their weight in gold. We’re part of an exclusive club and sometimes members are hard to find, but look out for them as chances are they’re looking for you too. Online forums, local SEND (Special Educational Needs and Disabilities) play groups (if you’re lucky enough to have one), at school or on the meet a mum section of Netmums.
Sometimes the friends we never meet but chat to behind our computer and mobile phone screens are the best kind of therapy there is.
And you’ll walk past fellow tribe members and find yourself wanting to high five them or give them a knowing wink.
I’ve got a handful of mum friends locally and online, all members of the tribe, who I can only describe as a relief. They make me feel like my normal is normal. They get it. All of it. And we can offload until the cows come home without any feelings of guilt.
Word to the wise – sometimes you’ll come across a competitive “my child is more disabled than your child” mum. I know – go figure. There is just no need. Just move along.
Applying For DLA Will Make You Feel Like Shit
Let’s be honest, every DLA form you fill in is a complete bitch. But nothing compares to filling in that first one.
The day that our Health Visitor suggested I apply for DLA I cried like a baby. It was the first time I had heard the word disabled associated with my son, who was then just 2 years old. The reality of him not magically catching up was presented to me with quite possibly the.worst.form.ever. Not to mention the uncomfortable awkwardness of applying for a benefit just because of Brody being just Brody.
Listing everything that is “wrong” with your child in black and white, over and over again, is soul destroying. But it gets easier every time and you get used to clinical terms and harden to the fact that being painfully clear on paper is essential in getting the help and support your child needs.
That said, in my experience so far, stark and emotionless clinical letters from consultants and doctors will always sting a little – because your child is much more than a list of symptoms and disabilities.
Heard About That Place Called Holland Yet?
Every so often someone will send you a poem about Holland* or tell you about a friend of a friend whose child was just like yours and miraculously caught up. Or someone will act like they have a degree in your child’s disabilities and you’ll listen to them telling you what you should do, whilst trying not to grind your teeth and mentally poke at them like some imaginary voodoo doll.
It’s important to remember that 99% of these people genuinely do it with good intention. Even though it can be completely draining.
*And if you haven’t read Welcome to Holland, which will inevitably come your way at some point, I can guarantee tears the first time you read it.
You’ll Become Friends With Dr Google
You will become a dab hand in Googling, knowing all sorts of medical terminology and diagnosing your child. Abbreviations will roll off of the tongue and you won’t even notice when people look at you like you’re speaking another language. Well, to most you might as well be! You’ll attend appointments and at least once get asked if you work in a hospital*.
*You might feel a little smug.
You’ll Notice That Exclusion Is Everywhere
Exclusion will hit you the first time you notice that your child no longer fits on a baby changing table or when you go to the park and their legs suddenly drag on the floor because they have become too long for the toddler swings.
It’ll hit you when your child is the only one not invited to a party or when you notice that all goods labelled disability have an extortionate price tag made to make life a little harder.
You’ll encounter it in so many ways and in so many places, it will make you feel pretty pissed off with the world.
But when you’ve got the strength, fight for inclusion and accessibility. It’s a battle we can all take on together.
Got A Quote On Your Wall Yet?
Ha my friend, well – it’s perhaps only now a matter of time. This includes your Facebook wall.
I’ve always been partial to the odd quote but since having Brody, they’ve taken on a new meaning. They help me put things into perspective and sometimes they just make me feel less alone with the emotional rollercoaster that is my brain.
Except that is, “God only gives special children to special parents”. Nope. Nope. Nope. That one can fuck right off.
Like It Or Not, You Will Become “That Mum”
None of us signed up for being “that mum”, but unfortunately situations force us in to taking up the position. It just comes with the territory.
I’m the type of person who wants people to like me. That includes the professionals involved in Brody’s care. But at times you’ll have to chase people up, leave yet another ignored message and question some decisions.
They’re just not all going to like you. But it’s got to be done.
Keep on being “that mum”. Confide in the tribe. They’re that mum too remember.
Remember That Life Is Never Like The Controlled Content Of Someone Else’s Facebook
Until I started writing, I don’t think many of my friends on social media knew that Brody had disabilities. Not because I was ashamed or didn’t want anyone to know. Trust me; I post way too much kid spam. But way back when, in the days where he still fit in a buggy, his disabilities weren’t particularly visible. And I wasn’t really the type to tag myself at his latest hospital appointment.
My point here is that nobody knows what goes on behind closed doors and Facebook newsfeeds. Remember one of my favourite quotes – comparison is the thief of joy.
We all post the good photos. Not the tears, tantrums (unless they’re particularly amusing) and hours spent where we’re just trying to muddle through and figure it out.
We’re all just trying our best to keep our kids happy and act like we can actually adult.
You Will Realise Who Your Friends Are
For every friend who you naturally drift apart from.
For every friend who is now awkward around you.
And for every friend who acts like your biggest champion on social media, but in reality is never actually there.
You will find so much joy in the ones that stick around through the tough times and the ones that you meet on the journey. They are truly priceless.
You’ll Witness Beautiful Things
You will learn that happiness can be found in the simplest things.
You’ll celebrate the mini and the milestones.
And you’ll know the beauty of love as it was made to be.
This post was written for the Huffington Post UK’s new section ‘EveryBody’. EveryBody focuses on what it’s like to live with a disability or invisible illness, as well as the challenges people may face and how they overcome them. To view the original post, click here.
I love this. I have just been writing about the wonders of diversity and how we have so far to go. Keep saying what you are saying. http://www.sendinthesenco.com/blog/inclusion-and-the-three-sisters
Thanks so much Rebecca. You’re so right in that inclusion is a word that’s thrown around but not really understood. x
I absolutely love this and agree with everything you’ve written – so brilliantly.
Thank you so much, I really appreciate it. xx
I read this on Huffington Post too. Great post x
Thanks Gemma, appreciate it xxx
They are a blessing in true sense. Please read this: https://columntribe.wordpress.com/2017/07/26/might-as-well-think-again-before-you-call-them-mentally-challenged/