Last Days

Lately I’ve been a bit ranty in the privacy of my own head, about the current trend for everybody being interviewed anywhere at any time about anything to begin their answer with “So…”

It’s been bothering me. But now I find myself with no better word to begin with.

So. Today is the last day of the holidays. Not just the holidays – my holidays.

After 17 and a half years of raising a child with special needs I’m returning to full time work on Monday.

So. This is it. That unimaginable day.

I feel I should be tripping hand in hand with my children around all the holiday activities on offer in Christchurch. But Jasper is away with a friend having a lovely relaxing lakeside holiday and Claudia is still recovering from her latest general anesthetic, three days ago.

She’s been pretty much sleeping and dribbling ever since, eating (spaghetti, yoghurt, weet bix) but not drinking.

My last day as a stay-at-home- Mum is being spend bribing her with the iPad-for-sip-of-water trade off and a shit-load of washing. Also Typical. For us. Normal. And nothing like a blimmin’ holiday.

The offer of full-time work came suddenly and unexpectedly. I blinked for several moments and then in a miraculous moment of clarity realized that yes, I could.

Since moving to Christchurch we have been slowly but surely lining up the Claudia-transitioning-into-adulthood-ducks.

Including moving into the individualized funding model of support and finding a wonderful support worker independently of an agency. Because we’re grown-ups now!

What Claudia’s increased independence from us has meant is that my time could be more my own again and I heard myself assuring my prospective employers that yes, I could indeed take up this,

I was ready to return to work full time and things at home will be fine.

Looking back, this is a point we have been vaguely working towards – and here we are, with perfect timing.

And it has caused me to look back.

Raising a child with disabilities is bloody hard work.

Its physically and emotionally hard. It’s relentless.

It limits everything about your day – you are never in control of your own time when you are managing another whole human body in addition to your own.

It’s unpaid.

Most families need two incomes to live comfortably these days.

You’d need to be earning a huge amount to make paying someone else to care for your difficult child while you work worth everyone’s time and effort.

And coming home to a disabled child after a hard day’s work simply means you still have a nights work ahead of you.

Disabled kids are hard on relationships. Ordinary stresses; money, siblings, time, exhaustion are amplified through disability because there is no escape. You can’t change the one thing which would need to change to make things different.

Some sites quote stats as high as 80-90% divorce when a child has a disability.

How Steve and I have managed to stay together through all the usual stresses plus blended families and then disability is amazing. We may have dodged that statistic because we never married!

It is perfectly usual to find Teacher Aids at schools who are solo parents of children with disabilities. If they want to work and they’re not teachers themselves, it is a job which suits their own families and at which they are expert.

But they’re notoriously underpaid and importantly don’t get the break from disability that we all need.

Parents of children with disabilities are not supported enough. They’re just not.

Don’t tell me about how lucky we are in New Zealand because someone in England gets nothing like this support. That’s sad for them but nothing to do with here and I live HERE.

Don’t tell me we’re lucky it’s not the “old” days where “kiddies” like ours got put away because, ghastly as they old days were about many things, we’re not there now and I live NOW.

Don’t even tell me it’s lucky there’s two of us because I can tell you that when one of you is working full time and stressing about earning enough to support a large and demanding family – the division of labour become very traditional indeed!

And don’t tell me I’m lucky to get to be at home every day because it’s not through choice.

I would have happily exchanged being able to do the work I love, adult company, work problems and some money for days at home washing faces, sheets and bums.

Families like ours need more help.

They need to be able to accept that help with dignity.

They need to be able to enroll their child at school without people wondering aloud how the normal children will cope with it.

They need the respite hours they are entitled to not to be allocated according to how badly they present their situation, but by the actual reality of their conditions.

They need to be assessed by people who don’t make them feel judged and they need any allocated support to be actual minimum wages for people, not just a “contribution towards”.

Otherwise what should be real support just becomes real extra money families have to spend to supplement the wages of people who they can’t actually afford to employ.

And these people are not just babysitters because these families have members whose needs are usually complex and sometimes severe and always require high levels of attention and who are all more than usually vulnerable. For ever.

It’s hard to find people to fill that role for less than the minimum wage.

Families who live with disability need to have it understood by families that don’t live with disability, that they don’t get breaks so if you can give them one do it ; just them give them a bloody break.

Income splitting would go a long way to help families on a single income.

It wouldn’t be hard to manage; we’re all in the system anyway and it would be one instant way to help families manage better. But while people have talked about it, nothing has ever got done.

Like so many who end up representing us, in government, on councils, advocacy groups and school boards – so many people come in, fill in their time and then go.

And while they talk about real positive change the only thing that ever really changes is that those people move on, the next lot come in and begin their rounds of consultation, their reports that confirm we’re stressed and the systems are failing, then they argue about money, then they leave and the next lot come in and the process starts again.

And the families are still sitting there growing more cynical. Can you tell?

And the worst of it is that looking after someone with disability and not working for yourself and having a generation of strangers representing agencies coming to you to judge you and your family and your situation is just so bloody demoralizing that I can only express all of this now it’s over.

Now I have a job of my own back in my chosen career the opinions of those others matter less.

Their judgements matter less because I feel less beholden now and that’s staggering to me because I hadn’t realized how vulnerable we all have been through our vulnerable daughter.

Wish me luck for Monday! It will be a massive change for our family – but one we’re ready for.

(Lizzie H this one’s for you. Great to see you the other night after so many years, to be reminded I haven’t posted for ages and to discover I’ve helped a little with this little blog.

I won’t leave it so long again x )

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