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Who Cares? - a brand new, raw, honest, emotional, tell-all blog from parents of disabled children

It’s the Easter holidays but my children wake up early today.

Today was going to be exciting. Today was worth getting up for.

For the last few weeks they have been planning a fun day with a carer. They would tell anyone who would listen that today was going to be fun and exciting.

So today’s the day!

My teenager is eagerly standing by the window, waiting for the carer’s car to arrive. But ten minutes go by and they don’t appear……”Mum. Are they coming soon?” he asked excitedly.

“Yes,” I reply.

I nervously think for a minute and utter……”They should be…” .

I check my texts to make sure there are no missed communications. It’s clear they should have been here 20 minutes ago.

The teenager is scared to go to the toilet because they might miss the doorbell. They want to open the door. They want to share the excitement. They’ve been waiting so long for this person/carer to come.

Half an hour goes by.

40 minutes go by and said teenager has moved from the window to behind the door, and is now sitting on the stairs, chewing their clothes in anxiety.

I am constantly asked: “Mum - are they coming?”

I’m trying my best to distract them and to keep cheery but my anxiety is horrible inside.

It’s clear she is not coming.

I don’t know how my teenager will take this huge let-down.

My mind is racing…….Will they hurt themselves. Will they cry!?

And how will my youngest react too? Now younger child is crying as they had things they wanted to do as well.

I feel so isolated and my head is in a spin. I have two children and no back-up. Nowhere to turn to. No one to turn too.

Why does this happen to us? All we ask is a very small bit of help and that is hard to get.

So now that the carer isn’t turning up, how will my day go?

One of two ways: Me treading on eggshells all day trying to keep the kids from being upset or….they both spiral.

You can guess what happened - negative behaviours from both. I decide to try and carry on with our day and leave to go to a play centre but it’s difficult because my teen is having none of it. He is refusing to walk anywhere so I have to abandon my youngest child to support and help him.

I’m now with a group of people but I’m struggling. I’m just about managing to hold back my tears but a friend has noticed and I’ve burst out crying.

What stops my own outpouring is I’ve not noticed my youngest is in a corner screaming and having a meltdown. Everyone is looking with their judgemental faces and my teen is sat on the stairs refusing to come in the hall where the activities are. Brave face back on.

After the session I don’t know what to do. I don’t want to go home. Home it's lonely.

My friends understand my kids have needs but I still feel so isolated as their children are much younger than mine and they haven’t really started their SEN journey yet.

Is this all what they have ahead of them? Disappointment, let-downs, a lack of carers…..the list is endless.

Who’s going to look after our children when we need a break or worse still, when we get to them point that we can’t take it anymore and are physically exhausted?

Who will care then?

When we are left like this we ask 'Who Cares?'? Who cares enough about disabled children? Who cares enough about those who look after them to give them a break? Who cares enough at the local authority to check that carers are turning up to work and doing their jobs properly? And when no one is left - Who Cares?

If you've been through something similar and want to share your story, please submit a blog entry to: All Who Cares? blog entries will be written as 'anonymous' and all names and identities will be protected.

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