Tightrope sleep walking.

The early hours of yesterday morning were quite tough for me. Nothing has changed really it’s the norm and has been all my life caring for that matter. My son had a seizure in the early hours and he was very loud. The morning had broken that’s for certain. It started at 2.00 am and the aftermath caused it to last until 4.30 am.

My son had had a seizure and he was so distressed as it was going on he thrashed about in his bed screaming ‘like he was literally fighting ‘something’ for at least 20 minutes. During that time I was unable to gain entry to his bedroom as he was hallucinating and even trying to talk to him was making it worse and intensifying the situation. He wasn’t with it and nothing can change that once it starts. When he had calmed down a little it was possible to enter his room and not before. This is not new this is something he goes through very often at night and has done so for most of his life. He is brain damaged, there is no cure.

Eventually, when he had calmed down a little it was possible to enter his room. I put his light on and he cried intensively, shaking like a leaf. He shifted up the bed as he wanted me to comfort him. I hugged him tightly and reassured him it wasn’t his fault. He was saying sorry which he always does. I wiped his eyes and he blew his nose and I continued to reassure him everything was okay now. It’s heartbreaking situation as he can’t control the terror associated with these seizures and it is pure terror he’s experiencing. An intense feeling of terror, he can’t prevent happening and terror he never knows just when will happen either.

No-one can ‘take it away’ no-one can stop it happening. No medication can stop it happening many have been tried and unfortunately medical science does not hold an answer to a cure. It is very technical and very complex to deal with.

I’ll describe just how complex it is from my point of view as the one who has been and is caring for my son for 31 years. It is more difficult than learning to walk a tightrope without a safety net. Most tightrope walkers learn very young how to perform the skills of ‘walking the tightrope’ and only then are they skilled enough to be able to balance without falling off.

I have learned the skills of caring for a complex combination of disabilities and mastered them enough never to fail to be able to deal with the extremes of what my care entails for my son even in the early hours.




And finally D.I.Y in my ‘spare’ time

D.I.Y. means do it yourself and I did and what a relief I’ve finally done my kitchen but there’s just one thing…My son helped and left his handy work for me to fix up. Oh, the trials and tribulations!


He had a seizure and bam I got myself an instant ‘mini’ open plan kitchen unit for free right in the middle of tiles (Luckily at the top). They are all the ‘rage’ you know…He’s started a new kitchen trend wouldn’t you know:)) P.S. it’s copyrighted. And I have always wanted to learn the plastering trade…Do you think it would look good with a LED light strip and a picture of a goldfish?

Anyway besides all that here is my kitchen (almost) finished..Mostly finished?


Yep, I need to tidy up and it’s normal in this house to have a Christmas Tree in the background in June. I have done 22 cupboards and 11 draws. This is just a small part of it. I will show ‘the full affect once I’ve clear up properly. This is just a taster.

and I found myself 1 knob short on another unit (story of my life) so I’ve had to order another one. If only it was always that simple:))


I could do with a new fridge but it’ll have to wait. I think if I get some more fridge magnets I might just get away with it?

BeFunky Collage30

Let there be light…I was talked into this one when I needed a new bulb. It’s pretty good as you get all the colours on the pad dim and bright options. BeFunky Collage.jpgx

Including a ‘normal’ clear light.



T’other end of the room.



and there’s more…Big Tings happening elsewhere too…More projects in the pipeline.

Exciting Things…I always wanted to be a designer and now I am…

The Journey continues with an update

This week has been hard work in the form of 15 hrs alone caring every night until 13.00 hrs and also having to deal with a completely idiotic Social Care team who have to be contacted via Acas which is an access point. 10 wrong numbers later via Acas and it turned into an all afternoon job of repeating myself only to be told ‘it’s the wrong department’. Finally, I got through to the right team. All I got from this was a duty worker noting matters down and emailing recommending my son is allocated a Social worker to address issues very outstanding now. I have heard nothing since.

The issues they are reluctant to deal with are:-

  1. A one-off payment for care needs and reimbursement for the items I was told ‘to buy first’.
  2. To recalculate my son’s direct payments to include the 15 hrs I have to do myself long-term and authorize under exceptional circumstances that I am also paid for the job I do each and every day.
  3. That they allocate a grant for a holiday which they agreed within carers assessment to provide.
  4. That they provide and pay for replacement care whilst I am away on holiday at my own expense September.

In the last few weeks, they have sent me a letter saying my son’s direct payments and care of just 9 hours a day have been reviewed. However, I haven’t been involved in that decision or review. Nothing I have written to them has been even vaguely considered. I also found out the Carers Grant they told me to apply for my holiday has been axed. They didn’t actually tell me where in the world I could take a holiday so I shall book one and send them the invoice and believe me if they don’t pay for it I will complain to the Ombudsman.

I already have a complaint in with the Ombudsman and I have heard a draft copy of the decision will be coming out to me by the end of next week. I have already had an upheld complaint via Ombudsman about the very same complaint. L.A. did not comply with the element of respite and have since only allocated 20 slots of 15 hr care for it over a 2 and a half year period since the decision was made and agreed by LA to provide it, following a further 2 yrs of the absence of respite beforehand and after a specialist HEALTH respite unit stated they couldn’t manage my son and he, therefore ‘lost his placement on that ‘specialist unit’.

This was a ‘specialist unit’ who liked to pick and choose the easier cases for respite only. A unit who allocated respite dates and made me and my son stand outside in the snow being told my son with learning disabilities, Autism and seizures could not come in as his respite had been ‘stopped’ by the new manager. So we both froze outside whilst we waited for transport to arrive to take us back home 8 miles away. Carers had been canceled and I was made to manage my son who requires 24/7 care alone for a week.

That did matter as since my son left the hospital in 2007 a Mental Health Tribunal ordered he must have respite in order for him to be allowed to leave hospital on section 117  into the community. So it was a breach of a tribunal ruling at the time and still is to date. Respite x 60 days per yrs was also ordered by the Tribunal which is, in fact, a Court of Law. Not that it matters to Social Care or Health for that matter. All seems to be ‘forgotten’ just 10 years later or maybe it’s more precise to say…10 minutes later.

Unfortunately, I haven’t forgotten and why would I when they held and deprived my son of his liberties for 17 months in a Hospital on section 3 of the Mental Health Act. whilst waiting for care, respite and day centre to be arranged…He actually had 3 days at a day centre in total in 10 years…They couldn’t manage him either. He put his hand straight through a safety glass wired window whilst having a seizure causing a hospital admission…caused because staff entered a room where it was arranged he went during a seizure. The fools had ‘left someone else’s medication in the room’ and went in when the protocol was NOT TO GO IN whilst my son had a seizure…This was supposed to be a specialist Day Centre…and they removed my son after just 3 days as they were ‘too scared’ to have him back..2 of those days were successful because I went with him. On the third day, they told me I wasn’t needed and to leave as ‘they could manage’…What a pathetic service from HEALTH here in Birmingham UK.

Oh and I won my case with Virgin Media.