Five Reasons Why Special Needs Parents Drown Again

08/08/2017 17:08 | Updated 09 August 2017
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It started as these things often do with a question; raised tentatively, not wanting to be the only one. Seeking out a collective, camaraderie and hoping in equal measure that it was and wasn't a communal concern.

Actually, it probably started long before that. Perhaps when I noticed that yet another friend had disappeared from social media. Maybe even after the chat with a fellow special school mum, the internal frenzy about the looming summer holidays evident in her voice.

So, I asked the question in a secret support group:

"Do you think that we experience a second drowning? Years later when life settles down; similar to the first when we discovered our child, and by that token our life, was going to be different?"

Chewing my finger nail nervously, invisible yet never more exposed behind my computer screen, I waited. Expecting people to either scroll on past not knowing how to reply, or a small flurry of 'you okay hun?' and 'sending love' before everyone went back about their day.

But I didn't. Instead what I got was a direct hit, smack on the rawest of nerves.

So I asked another question: What the bloody hell is this?

You see I've done the hard graft. I worked through the stages of grief (and dallied far too long in denial) before landing eventually with a grateful thud at acceptance. We climbed the metaphorical mountain, got to the top and discovered that the views were far from unpleasant - they were in fact largely lovely; glorious even in the right light.

It's not our children, let me be absolutely clear, that make us sink. A disability campaigner I admire put it best this week when she said: "Our society is generally not equipped to support people like us. Your disabled baby was being a disabled baby, not hatching an evil plan to wreak havoc on you and your family."

So what is it? I had my own theories, but the group post threw up a few more I hadn't even considered and it largely fell down to five things.

Self-imposed social isolation

I didn't realise I was doing it, but I am. And it didn't happen overnight. In fact, it crept up on me unbeknownst. The reality of the situation is that I just don't see people, at least not in the way I used to.

I have no idea why I'm not seeking out my friends' company anymore. There has been no falling out, they are all still fist-pump ace, but the drift has happened regardless.

That is the first thing I need to correct before it is too late. One lovely lady told me that one day she looked up and everyone had gone, even her husband.

But you know, onward and upwards, cracking on.

We think we are annoying everyone so lock it up in our heads


They are just not cute anymore
, one parent said to me. The older they get, the less interested people are in them.

This was a widespread theme and one woman said there was a stigma almost about bringing up concerns about our children for fear of being seen as 'moaning'. Even the professionals expect that we will just cope with new problems as we've been doing the SEN thing for years, someone else added.

Then there is the guilt that we are so locked up in our lives that we are letting other loved ones down.

But you know, onward and upwards, cracking on.

Access to medical information

The reduction of medical appointments, due to either being signed off clinics or moved to annual review, is a big one for me. A year is a long time to wait to voice your fears to a specialist doctor, no matter how fantastic your GP might be.

Lots of us have to resort to using A&E 'inappropriately' to get back into the system. I'm holding my hands up to doing this at Christmas last year when I couldn't get a medic to take seriously my boy's crippling migraines. As a simple preventative medication changed his quality of life immediately, I'd do it again in a heartbeat.

But you know, onward and upwards, cracking on.

Ghosts in a flawed system

When Gabe was six months old, I met a lady from Kids and she gave me some advice that I've never forgotten: put on your boxing gloves and don't remove them. It is true. You have to fight for everything today, whether you want to or not. Still there is no guarantee. The system is crazy flawed with too much money being spent on shutting the door after the horse has bolted.

But you know, onward and upwards, cracking on.

Fear of the bogey-man who is adult disability services

This is the killer. If we think services for children are scary, then a glance at the adult provision makes you want to commission Indiana Jones to find the elixir of life (I'm currently crowdfunding). A parent of an older child told us looming adult disabled services are 'like when you have a new baby and they're either crying or you're waiting for them to cry, and the waiting can be more stressful.'

Maybe they are not so bad, but I suspect there is no smoke without fire. I can't bear for my other children, on Gabe's behalf, to have to battle against a system obviously designed as a side-line by the same people who do the game show The Cube (you know the one only trillion-medal-holder Mo Farah won).

There are probably many more factors into the reasons why so many of us are getting knocked down again, whereas before we just muddled and juggled through. I think recognition that it is 'a thing' could be the first battle in the war and a reminder to be kinder to ourselves.

Even since I raised the question, the overwhelmed sensation has mostly evaporated as I knew it eventually would. I've been sunbathing on the beach again, paddling in the sea; looking out to the ocean wondering why it looked so scary.

Maybe we need these moments of going under to reassess, check in on our own needs, and prepare a little mentally for the future. Just so we have better balance the next time we stumble whilst jumping the waves.

Otherwise, where will we all end up?

Onward and upwards, cracking on...

Cracking on...

Cracking...

Crack.

HuffPost UK Lifestyle has launched EveryBody, a new section calling for better equality and inclusivity for people living with disability and invisible illness. The aim is to empower those whose voices are not always heard and redefine attitudes to identity, lifestyle and ability in 2017. We'll be covering all manner of lifestyle topics - from health and fitness to dating, sex and relationships.

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