10 Things I've Learned as a Mom of a Child With No Primary Diagnosis

I doubt anyone’s parenting journey is the one they envisioned when they were pregnant, counting down the weeks until the birth of their child. But when your child has disabilities, you have to disregard those annoying milestone books or emails, forget that dreaded book the health visitor (or nurse) handed you and well — quite frankly, wing it — following your own child’s pace and family’s new path.

There are so many things 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. 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.

1. 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, chances are they’re looking for you, too. Online forums, local Special Educational Needs and Disabilities (SEND), 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’ve never met in person but who we 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: you could come across a, “my child is more disabled than your child” mum. I know — go figure. There is just no need. Just move along.

2. Applying for Disability Living Allowance (DLA) might make you feel terrible.

Let’s be honest, every DLA form you fill in is a complete bitch. But nothing compares to filling that first one.

The day 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, can feel 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.

3. Heard about Holland yet?

Someone might send you the poem, “Welcome to Holland.” And if you haven’t read it, which will most likely come your way at some point, I suspect tears the first time you read it. Or someone might tell you about a friend of a friend whose child was just like yours and miraculously caught up. Or someone could 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 them with an imaginary voodoo doll.

It’s important to remember that 99 percent of these people genuinely do it with good intention, even though it can be completely draining.

4. You’ll probably 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).

 

5. You’ll notice exclusion is everywhere.

Exclusion might hit you the first time you notice 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 might hit you when your child is the only one not invited to a party or when you notice 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 might 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.

6. Got a quote on your wall yet?

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 this one: “God only gives special children to special parents.” Nope. Nope. Nope.

7. You might become, “That Mum.”

 None of us signed up for being “that mum,” but unfortunately, situations force us in to taking up the position. It 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 message and question some decisions.

They’re 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.

8. 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 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 when 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: nobody knows what goes on behind closed doors and Facebook news feeds. One of my favorite quotes is, “Comparison is the thief of joy.”

We all post the good photos. Not the tears, tantrums (unless they’re particularly amusing) and hours spent when we’re trying to muddle through and figure it out.

We’re all trying our best to keep our kids happy and act like we can actually “adult.”

9. You will realize 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 who stick around through the tough times and the ones you meet on the journey.

They are truly priceless.

10. You’ll witness beautiful things.

You will learn 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: your family.

That simple.

Follow this journey at Brody, Me & GDD.

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