News & Events

Pin a dirty nappy on the door

Last Reviewed 15/04/2016

By SWAN UK member and blogger, Alison Bloomer

First, I asked for advice from a friend in a similar situation:

Well whatever you do DON’T tidy up. Or wash your hair. Or the kids. In fact, get the bin and tip it out all over the kitchen. Leave a dirty nappy on the table. Even better pin a dirty nappy to the door haha. Good luck. You are going to need it.

Next, the gist of suggestions from a support group:

You need to visually show them that you are struggling. It is not enough to just say it. If it looks like you have your shit together then they will walk out and leave you with nothing. Cry. Cry lots. Don’t stop crying.

Then on a Mumsnet advice page:

You will need to be at ‘family meltdown phase’ before you are considered eligible.

All this “research” was in preparation for one of the most important interviews of our life. I and my little family were about to stand in front of a judge (A SOCIAL WORKER)  and then hopefully a jury (THE PANEL) to see if we were deemed fit (or not so fit in this case) to access social care support and respite.

We need some help.

I finally admitted it.

It took us 5.5 years, but it is quite clear now that we can’t do this alone. We shouldn’t even attempt it. That would both foolish and dangerous.

At first it was denial: I  shook my head when a consultant first asked if we needed some respite. Good grief, why? My baby is merely delayed thank you very much.

Then pride: I’ve got this. I have. Look at me. In control. I. Can. Look. After. My. Own. Child.

Followed by sheer bewilderment: How do we even start to access help? Where do you go? What the hell.

Like so many families like ours, we’ve been so busy juggling all of the balls that we didn’t see that there (just right there) is a shelf where we can put them down for a bit and rest our arms.

The main reason we didn’t see it was because we couldn’t even look up for ages. It actually took people coming along and grabbing a couple of the balls off us. Gabe’s school took quite a few (some quite slippy ones) and then a young carers charity called Spurgeonstook another. We also often throw a couple in the direction of our support group – SWAN UK – who are surprisingly good at catching.

The simple fact of the matter is that we have gotten so skilled at juggling that we have forgotten how nice it would feel to just bounce one or two against a wall.

But no one can keep up the act for long. It is unsustainable. Chances are we will get repetitive strain injury. Or we might trip over. Or someone could throw a football into the mix. Then what? Balls everywhere is what. Then we’d need a whole of heap of people to not only help us to find them and pick them back up, but to build more, bigger, sturdy shelves while we get ourselves sorted.

At the minute we’d be happy to access that little shelf people have told us about. The one that is just there. Just slightly out of reach. Take the load off a little.

It is a mere foot away but it could be a mile. Such is the current convoluted process of accessing the care and support system. A  complex and confusing set up with lots of organisations involved in assessment, arrangement and provision of care.

And the fact that there is only one pot and many, many spoons.

With limited resources those in the “greatest need” are quite rightly served first. I’d rather my elderly neighbour whose husband broke his hip got help before us; just as it is essential that my friend who has to resuscitate her child back to life at a moment’s notice has the right care package in place at all times.

Ideally the pot would be endless, but then back here in the real world who gets the rest? How do the assessors decide?

More often than not they have to apply the “shutting the stable door after the horse has bolted” approach, which is ultimately more expensive and a greater drain on limited resources. An approach needed simply because families’ care needs are not getting met before they become a crisis.

I don’t want to become a crisis.

But I refuse to cry. Or pin a dirty nappy on my door.

The facts should speak for themselves.

The main reason we are asking for help is because my son gets very distressed during feeding. Not every mealtime, but enough of them. Too often the spoon will be refused and we are in the thorny territory of either force feeding or starving him. It is huge. And this happens every 2-3 hours for nearly an hour a day.

Sometimes you take a deep breath and crack on, other times the stress sears through your soul – and there is nowhere to run. Not just us. But his brother and sister who are just nine and eight years old.

To navigate through and not drown, we are going to need to have a “short break” from time to time. But we need a specialised childminder. These are not only hard to come by, but they do not come cheap.

Hence our social services begging bowl.

Don’t get me wrong we are blessed to live in a country like this. It does look after its most vulnerable children in so many fantastic ways (honestly, it really does). We get Disability Living Allowance to help pay for the countless extras. Motability. A Blue Badge. We are also active and expensive users of almost all facets of the National Health Service.

In terms of parental support, we had regular contact with a rather amazing early support worker and our wonderful health visitor checked in regularly. With their help (and a few others) we sailed through the statementing process and won a place for Gabriel in an excellent specialist school setting who provide him with transport so I can still take my other children to school.

I check my privilege lots and I am utterly grateful.

But we need more.

Just this month a study advised that government agencies, service providers, family members and peer support associations should provide practical and emotional support to assist the parents of offspring with any form of intellectual disability across the lifespan. It added that stress has been associated with poorer health outcomes for parental carers.*

We can’t afford to have poorer health outcomes. Not when we have to prepare to look after our children for the next 65 years.

I don’t want to become one of these statistics.

That is why during a particular bad bout of poor feeding (and screaming refusal of any drink); when we were all stuck in the house day-after-day with our own little mood-setter placing us all at level miserable; when his brother and sister were acting out as a result, I picked up the phone and asked for help.

Nine months later we still don’t have any. But apparently 100 hours a year is on its way.

To save you the maths that works out at 12 sessions (8-hours each session). So either one day a month to take his siblings places we can’t access with him. Or 12 days to use during the 13 weeks of school holidays when I have to work and my husband is juggling three children around Gabe’s feeding demands.

It is no where near enough. But it is a start when it eventually starts. And there is an option to pay to top up (so kind).

It only took scores of calls nearly every week for nine months to access it. And then we’ve only moved to the next stage as a wonderful charity called Kids advocated for us.

We should have gotten more. It should have been in place long before we asked for it. It shouldn’t have taken so many phone calls to chase it and we shouldn’t have had to rely on an outside agency to fight our corner.

Gabe is a bit of a black and white case – he is five and doesn’t walk, talk, or eat by himself (yet). He is reliant on an adult for all his care needs. All day. Every day. So if we were not considered worthy of support, who is?

The process is undoubtedly complicated by the fact our child has no diagnosis. We can’t explain him in a simple one-phrase catch-all that a professional can Google later. And there is always that frustrating underlying assumption that because the medics can’t find what is “wrong”, he will one day catch up and we’ll all live happily ever after.

Each Local Authority will have its own assessment procedure and I get that it must be difficult to make judgement calls especially when time is limited, workloads are high and money is tight. I would also like to believe that if they could, social workers would be doling out care packages to us all.

I really would. As I’d hate to think we still haven’t got support because I didn’t cry or because I tidied up the living room.

But I suspect that is quite likely.

I fear that for every carer that plays the game and shouts and yells to get themselves heard and their needs met (and bravo to them), there will be thousands more facing an imminent crisis, destroying their own health and feeling anguished and isolated.

All because when they asked for help they didn’t pin a dirty nappy on the door.

And that my friends is not just a travesty, but it is criminal.

The aim of Undiagnosed Children’s Day is to raise awareness of undiagnosed genetic conditions and SWAN UK (syndromes without a name), the charity that offers support and information to families of children affected by these conditions. The theme this year is The Big Ambition and the aim is that all families affected by a syndrome without a name get the support they need, when they need it, regardless of whether their child has a diagnosis or not.

For more information go to http://undiagnosed.org.uk/undiagnosed-childrens-day-2016

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* http://www.ncbi.nlm.nih.gov/pubmed/27015406

 

By SWAN UK member and blogger, Alison Bloomer

As published at: complicatedgorgeousness.co.uk

If you'd like to share your story please email info@undiagnosed.org.uk

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