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In the Bleak Mid Winter......

Life with a special needs child is tough. As I write Muir sleeps, all 18 years of him. He has the cold, a touch of flu perhaps. We have all had it and it has worn us down. But Muir's humour is surprisingly in tact. He is smiling a sleepy smile, through a snot ridden nose and congested lungs. Every now and then his crusty nose begins to bleed. Life has come to a standstill. Everything has been cancelled. No school, no charity work, no food shopping, no phone calls, no getting up and getting dressed and getting on with the day. No one to talk to.

As Muir's toast grows cold and his glass of milk reaches room temperature, the time slips by. Meds, the all important meds are also waiting. For now he sleeps but if I push the agenda, the 'nos' and the 'nots' will follow with that very aggressive deaf sign he uses for expressing his resistance to everything other than sleep. It's been like this for four days now. I expect tomorrow will be the same. And my own tooth ache continues.

Meanwhile social media entertains me. Lots of chat about vaccination, discussions about Katie Price and her local authority's support for Harvey's school placement, the plight of carers and their life of isolation and also the eternal threat of diminishing benefits. I say 'chat' but actually some of it is quite distasteful. When people feel hard done to they don't so much chat but rather shout or whinge and moan or even bully. The one thing I accepted a long time ago is Muir is no one else's fault. Our lot is hard - toughest on Muir of course. But it is no else's fault. It's just life and we have to get on with it even if the rest of the world, including family members fail to understand what we are coping with.

I vaccinated Muir and it resulted in his first seizure. My appointment was for 4 o clock. Instinctively I didn't want him vaccinated but my doctor insisted. In fact, she rather hounded me until it was done. By 10 o clock that night he was in hospital and I had witnessed his first seizure. There is no doubt that Muir's vaccination caused his first seizure. That's a fact of his life. It's on record in his medical notes. And yes Muir has a mutation in the SCN1a gene that means he is predisposed to a severe form of epilepsy called Dravet Syndrome but we will simply never know if vaccine was or indeed was not the trigger for this devastating neurodegenerative condition. No one will ever convince me that vaccination is without risk. Muir's life and our life is not one I would wish for anyone. In the absence of answers the risks are therefore too great.

And that is why the funding for special needs children should always follow the child. It is not Muir's fault that he has a severe neurodegenerative condition. He has no voice, he cannot speak for himself. It is our moral obligation to support him. We live in a society where benefits are for all and if the needs are such that a child or an adult needs care then the State provides that care. That is the way our benefit system is structured. Muir will never work, he will never marry, he will never have children. He can't read or write and he can barely colour in between the lines. He needs care24/7. That is why the benefit system will always support him. It has done since he was born and will continue to do so indefinitely because of his special needs. My role, as his legal guardian is to ensure that his needs are properly assessed and that he is appropriately cared for. It is not my role to support him as it is indeed not my role to support any of my children in adulthood. Katie Price made a mistake - the mistake she made was to even suggest the equivalent cost of Harvey's care were she to meet it herself. Why would she? Harvey is entitled to this benefit in his own right. He is a child in need. The benefit belongs to Harvey not to his mother.

And so here lies my contradiction. Despite my views above, I have little tolerance of the culture of entitlement. Our benefit system is there to support those in need and only those in need. That mind-set that says ' I am down on my luck' and therefore I am going to 'milk the system' for all it has to give is simply unconscionable. Those who lose sight of the ability to help themselves in anyway whatsoever, who believe that the world owes them (and theirs) everything because somehow life did not go quite in their favour - they need a wake up call. Everyone is capable of achieving something, doing something for themselves. It is those who choose to do nothing for themselves and instead demand a life line from the State that I have no tolerance for. We see them at MMT.

Those who insist that they are entitled to an epilepsy alarm for their child instead of recognising that the alarm is in our gift, based on available funding that so many kind hearted volunteers strive to raise in support of those more needy than themselves. The good souls are the ones who immediately give back in whatever way they can, a fundraiser of their own or even the smallest donation. They stand out in the crowd. They are the truly deserving ones.

In the bleak mid winter it all seems so much more gloomy. Even I struggle with it sometimes. Life with a special needs child is tough, it is lonely, it is challenging, it can be depressing. Sometimes there is not much to feel uplifted about. But at least we have a benefit system that aims to meet our needs, at least we have charities that are reaching out to support us, at least there are kind people in the world who understand that it's okay to care.

On social media is the lovely story of Alan Barnes, the disabled pensioner that was mugged outside his home and the beautician, Katie Cutler, who raised more than £250,000 to support him. She didn't have to do that but she did. And that's just lovely. 

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