Stepping out of the comfort zone.

A.M.
Tomorrow is the DWP Tribunal and I’m having a serious problem staying calm. From the outside I probably look like I’m fine, but my stomach is shivering and I’m having trouble breathing properly. I know what it is – I’m on the edge of an anxiety attack, but I can’t let myself go and have a meltdown because I have to look after PW and SB, not to mention deal with the British Gas and Tesco Mobile bills.

I feel like I’m stood on the edge of a cliff, next to a rickety rope bridge and I have to walk across the bridge to get to my baby who is crawling along the edge of the cliff on the other side… it’s something that I have to do, but I really don’t want to.

I hate confrontation of any sort – dealing with the bills gives me the same kind of feeling, but this one is really strong.

S, the TAF support Worker, is helping me with the Tribunal. She’s coming over this morning to help me prepare for it. Maybe I’ll feel better after that, but I doubt it.

This feeling makes me want to climb inside a huge box with a torch and my duvet and just hide from the world. I can’t cope with feeling like this, it’s not the way I deal with things. Normally I take a deep breath and get on with it, pushing the fear back down. Today though, the fear is almost too strong.

Later…

When NOS turned 16, he had to swap from DLA to PIP. S helped me to do the form and we thought we’d be okay; it took a year to get sorted out, but the DLA was being paid while we waited for the decision. Our life was falling apart at the same time – we’d been made homeless and were in temporary accommodation, but otherwise we were okayish. We moved from there to a housing association house while we were waiting, the chaos adding to the uncertainty.

Then PIP made their decision. They decided that he didn’t need any financial help for daily living, but conceded that he had enough points in the Mobility section to get that…

We lost not only the DLA money, but my Carers Allowance and Income Support as well because it was linked to my being NOS’s carer. That mess took six months to sort out and meant that I had to swap my main Carer responsibility to TOH. That actually worked out for the better, but we decided to go ahead and do a mandatory reconsideration form.

They repeated that he didn’t need any extra help… as if turning 16 had made the problems he had with various activities just disappear…

So we sent in an appeal.

Now I have to go to a Tribunal (basically a panel interview) and explain why I think he should still get the daily living component of PIP.

I’m terrified that I’m going to mess this up for him.

P.M.

Just because he is doing okay at the moment, doesn’t mean that he will in the future – all the traits from the original assessment are still there, he’s just learnt to hide them better, to cope with the sensory problems and to ask for help when he needs it.

They’re under a thin layer of confidence and knowledge; it doesn’t take much to pierce that layer. A meltdown is never far away and I’ve had to deal with them frequently in the last couple of years.

One of NOS’s meltdowns is much more difficult to handle now that I can’t just wrap my arms around him and cuddle him calm. Depending on the stimulation, he can erupt into temper and violence, curl up and cry or take it out on himself physically. The first are becoming too frequent for my liking as he gets older… and I hate the other two because he gets so depressed and down that I fear for his mental health.

He still needs someone to be there to help him deal with the things that baffle and scare him – cooking instructions, timetables, going to new places alone, bills and working and money management (amongst other things) – these things that most people take for granted as being if not easy to do, are at least able to work them out with a little help.

When he can’t get help with them (and we are not going to be around forever) then he melts down, starts neglecting himself eating, drinking, personally… all the things that the DL money is supposed to pay for someone to help him with.

After 18 he’ll be adrift in the ocean that is Adult Social Services, and believe me, if you thought that children’s social services and help left something to be desired, the adult version is much, much harder to get help through. That’s what PIP is for – to be able to pay for help when he needs it.

And If I mess this up, if I say the wrong thing or answer a question without the right words, he won’t be able to get that help…

I’m terrified and I can feel the stress reactions starting; I’ve been scratching at non-existent hives all day, my stomach feels like it’s made of lead and my throat is starting to get sore.

S will be there with me and I’ll have the distraction of SB to occupy my hands, but it doesn’t help…

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