Some people need to join the real world!
There are many types of disability, and different levels.
Children like Harvey qualify for high level support services from social services child disability team. This means access to direct payments, personal assistants, respite, short break activities, and a whole host of things. Not that Katie Price needs any of this money having sold her soul to the realms of reality TV. She could quite easily afford her own carers, however I read her mum cares for Harvey. She doesn’t need direct payments and she can afford to go private for any services Harvey needs and not have to wait for overstretched NHS services. Sure she shouldn’t have to, but if I had the money I would for Dinky.
Harvey has multiple conditions, most severe of which is a limited pituitary gland. If he didn’t have this condition, but still had the ADHD, ODD and Autism, I can tell you she would not have found it so easy to get services, of course that is dependant on the severity of his autism. That is not to say he doesn’t deserve any of the support services available, it is good that Katie can get these services… But does she have to pull down all the other parents too? The criteria is so restrictive families who really need the help are not getting it because they narrowly miss the remit despite having children with great difficulties
When you don’t have a parent who can just quit work and look after your special needs child so you can go marry a line of B list celebrities, or an army of back stage staff to find all the forms for you to fill in, you have to rely on the first people you meet to tell you what is available. If they don’t know you do have to go look for yourself. This doesn’t make the parent lazy or ignorant if they don’t find everything. Not all services are widely publicised. The more able your child to ‘look normal’ the less services will take the child on.
When I walked into this parallel universe, I was pointed in the direction of disability living allowance and the special needs group, this makes our life easier, but I was told by a family link worker that I couldn’t access support without a diagnosis, which was not correct. So what would a parent do if they believed that rubbish? They would just be believing a professional. Luckily I am not one of those parents and I already was in contact with the local autism support groups, and had applied for DLA before a diagnosis, because the need is there now. However it wasn’t until I went to a local parent carer conference that I actually found more about what was available to us as a family. some parents work 5 days a week and do not have TIME to go looking for this support.
When you do find services, there are long waiting lists and you are told there is a lack of funding available. Everyone tells you to ‘use the DLA money’, which is fine, except it is not an endless pot of money, with sensory toys, special needs swimming classes, her group, replacing broken items, and all the other expenses that come with a child with additional needs. I cant afford £18 per hour for a PA to give me a few hours break during holidays or at weekends.
I am sick of being down trodden by those who are truly ignorant. If it isn’t Katie Price it is Katie Hopkins. When both of them can keep their mouths shut it becomes a fight to explain to the general public, why your child has a fast pass in LEGOLAND, or priority access to the sealife centre, as if these are perks! Sometimes as much as I love Dinky, it would certainly be nice to be able to go on holiday like some of her classmates, or enjoy meals out. We don’t go to restaurants, to Butlins, on lovely trips to Majorca. I wouldn’t be able to take Dinky without these ‘perks’.
Today dinky went to an autism friendly viewing of turbo. My dad took her! Which was a welcome break after the last two days of the farm and being inside.
Apparently dinky ran off from him at the end and scared the living daylights out of him. Then he looked angry when he tried to find her and she ran off again. She was a pickle in mc Donald’s where they had lunch, but other than that it was not too bad.
Since she has been back she has been a hyper pickle.
Now she is in bed… Tomorrow is inset day