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Let me tell you why I’m struggling

Let me tell you why I’m struggling

I’m struggling. It might be obvious but then again it might not.

Everyone’s busy with their own lives. I get that. We all have problems. I get that too.

But let me tell you why I’m struggling anyway.

It’s actually not because one of my children has complex disabilities.

Oh yes he’s the reason my back aches, my eyes fill with tears and I am always tired. (He’s also the reason I wake up every day, the biggest reason I smile and the motivation to carry on).

It’s not because my other child is autistic though that makes me worried about her vulnerability and her naivety. (She’s also the funniest, smartest and most caring girl ever)

What really makes me struggle is this:

It’s the broken promises from people who are paid to support us. Social workers who talk about respite and funding and grants only to later admit that we either don’t qualify or the funding ran out (again!).

It’s the schools promising at meetings that things will change only for two weeks later to find we are back to how things were before.

It’s the politicians promising reform for children like mine only to not bother doing anything for us after being voted in.

It’s organisations who promise me the earth but leave me with just a handful of dirt. I feel like a beggar with my hand out waiting for the next invisible promise.

That’s what makes me struggle.

It’s the fighting for every little thing.

Fighting to ‘stay on the books’ when everyone wants to discharge just to meet targets.

Fighting to get decent targets on an educational support plan, get it written up in a timely period and keep it up to date.

Fighting for transport that is safe, fit for purpose and adequately staffed. Fighting for a school that meets my child’s needs then fighting just to keep them there.

Fighting to be heard. Fighting to be seen.

Fighting for the tiniest scrap of respite just to get breathing space only to be judged by society with cries of ‘you had them. You look after them!’

Fighting for basic benefits from a government who thinks 48 pages of information still requires several pages of ‘anything else we should know’ and then turns you down anyway.

Fighting to find written evidence because it takes months after appointments just to get the most basic of reports, and even then your child’s name isn’t even right.

That’s what makes me struggle.

It’s the relentless judgment, from family, professionals and even strangers.

‘You are not still dressing a child THAT age are you?’, ‘why can’t you just get a babysitter like everyone else?’, ‘you should get a job instead of sitting home all day watching daytime TV!’, ‘Did you vaccinate?’, ‘no child of mine would get away with doing THAT!’

Everyone has an opinion and it seems that because my children are different that it’s ok to share that, often loudly.

If I park in a disabled space I am wrong because my child can walk, if I use a disabled bathroom then I am taking it away from a wheelchair user, if I use the baby change room (because proper suitable changing facilities are so rare) I am taking away from mothers with babies.

If I let my child flap in the lift in excitement I need to ‘calm him down’, if I drag him away causing a meltdown I need to ‘learn to control my child!’

I’m the easy target, the obvious issue, the biggest problem in society.

That’s what makes me struggle. Yes the care needs of my children are high. Yes the hours are long, sleep is little and the burden at times very heavy. But they make everything worth it.

If only I could just care for them without worrying about broken promises, the next fight for something basic we need (did I mention the NHS only allows my child three nappies in 24 hours? Three? How many times did you pee today?) or the constant stress of being judged.

The caring for my children isn’t what makes me struggle.

It’s the fact that no-one else cares that does.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Miriam Gwynne

Meet Our Blogger

I am 41 and from Scotland. I have nine year old twins who both have complex needs and a husband who has autism, depression and nf1. I read, write, help out in my daughter’s school and have a strong faith. I laugh, cry and over share!

View Miriam’s Profile

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