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Pumpkin - Disability and war?

Discussion in 'Family Life - Stories, Pictures & Updates' started by oesdog, Oct 18, 2012.

  1. oesdog

    oesdog Songster

    Jun 7, 2010
    Everyone on here knows I have a disabled lad.
    Well lately I have been a bit annoyed about his daycare centre. A lot of you have helped me through finding a restbite care centre to have him for a few nights a year. This month he had his first overnight. The restbite staff picked him up from daycare and he stayed over with them and then they brought him back to daycare the following morning. Dan takes night fits and I only had one dose of Madasalam which helpes stop seizures so I said to the day care please send his Madasalam you have at the day care with him to his overnight - so that I didn;t lose mine and because Dan has more night fits than day fits and the day centre say they "don't see him have fits?" also they are nearer the emergengy unit as the Hospital is less than 5 mins away from the day centre. I got a Phone call back from them to say "it is not our policy to send meds with our trainees to overnight care?" WHAT!!!!!!!! I was raging because the Meds are in my Sons name they are his meds NOT theirs! So he went to his overnight without his meds. I have since had to get another one especially for the overnight care centre! I was so mad. I told the epilepsy nurse at the hospital and she said that it was all about human rights crap. Apparently they are pushing the medical council here because folk like Dan are being put at risk because of stupid "policy" that leaves vulnerable folk like Dan at risk and often without meds. The Nurse actually said Danny was being denied his Human right of equality as if he was of "normal mental capacity" he would not have left his epilepsy meds behind! So I am not best pleased with the centre to start with.

    Then I get a message home to say "we are carving pumpkins and it will be £2.50 each.
    The group leader explained that they were doing this because "we- therefore Danny doesn't cellibrate halloween and they wanted to do something he would be involved in". Which on the face of it sounds a lovely thing to do until you think about it.
    They are just going to carve pumpkins - I assume this in someway involves a sharp object? Which when you consider Dan in blind and has the mental age of 18 months it may not be very "safe" - "health and safety and all that?" Then I got to thinking where are all these pumpkin guts going? So I wrote back and said it was a lovely idea to include Dan but what exactly were they doing with the Pumpkins? Were they making something useful with the insides? Like soup or Pie? But NO apparently they are not allowed to under - you guessed it "health and safety?"
    So my very vulnerable and disabled son who is blind and severely brain damaged CAN use a sharp object to carve out a pumpkin and be left for 24hours without his epilepsy meds but he cannot have soup or pie?

    Then I got to adding this all up - £2.50 There are about 8 trainees ( that is what they call them apparently it's their "human rights" to be called Trainee and NOT mentally handicapped - I guess that is supposed to reduce the social stigma of disability?)
    So I added that up and it comes to £20.00 then I looked at the price of shop bought Pumpkins which are actually only £1 each. The centre has it's own craft items so the cost of the Pumpkins are £8 which leaves £12 unaccounted for. So today I wrote back and asked what exactly are the overheads that this £12 is needed to cover? I got a tart letter back saying the Trainees apparently had a group discusion and decided on £2.50. Which didn;t exactly answer the question of where this extra money was going? If they had said Oh - we are going on a shopping trip to get the pumpkins and thought it would be nice to stop for coffee and buns? Or we are going to get treats like some buns to eat in the centre while working on the pumpkins I would have been satisfied but instead I was told that my son who has a mental age of 18 months has decided with the group to perchace apparently very "special" pumpkins. She did however say his Pumpkin could be "perchased seperately" if I wanted? - so obviously there was NO real plan in place for the extra £1.50

    Anyhow I wanted to write a note back :_
    NO I cerainly would not wish Daniel's Pumpkin to be perchased seperately, As Daniel has used his "human rights" and apparently opted to perchase a very expensive and "special" Pumpkin. (Nearly x3 the price quoted by a leading local suppermarket) I can therefore assume that the said "special" Pumpkin will be uniquelly and beautifully carved to equal that of it's financial value? We look forward to recieving this very special piece of creative artwork!

    My DH thinks I am being over harsh? But I am of the feeling that I want my son to be Safe(Getting his meds!), Secure, healthy and happy and not be financually exploited! How on earth can a group of retarded young adults work out the real cost of things and why were they not given guidence from the centre and I was not given an answer to the unacounted for funds?

    Oes [​IMG]
    Last edited: Oct 18, 2012

  2. HeatherLynn

    HeatherLynn Songster

    May 11, 2009
    Kentucky, Cecilia
    I just want to hug you. Ok I sorta agree with your husband on the pumpkins BUT I think maybe you are just plain fed up and the pumpkin carving is just the first thing that came after where you can really vent a bit. I think you should be fed up and if you need to give them a bit of heck at this point, then go for it. I hope you eventually get some common sense people to help you though, its way too much to deal with the day to day needs facing you and having to deal with this insanity from the center.
  3. oesdog

    oesdog Songster

    Jun 7, 2010
    Yes they have been really unhelpfull lately - they even refused to give him his tablet meds at lunch and wanted to get all his meds changed to syringe? Apparently his Human rights were being breached by him not "knowing" he was being fed pills for his epilepsy hidden in his food? This chap has a mental capacity of a baby of 18 months! it is not for him to be thinking on the issue of whether to take a pill or not! Fact is if your baby is sick you give him meds to make him better you don;t have a discusion about it over the pram handle? So I ended up having to get the consultant Dentist to "tell them" to give him his meds in his food because if they didn't and forced it in with a syringe( apparently they think he would understand he was getting meds this way?) Then they could break off the caps the dentist fitted and cause him to choke. This could be a risk if they blocked his breathing! So does my son have a Right to safety more than a right to discuss whether he should take his epilepsy meds or not? It really does get to me so much!!!!!!!
    I mean if they want to have a debate with Dan they can go ahead but I don;t think he will have a lot to say on the subject. Doubtless he will just want juice and his Tigger toy like any other toddler - he is simply not interested in human rights!

  4. KristyHall

    KristyHall Crowing

    Jan 27, 2011
    North Alabama

    They're giving you the run around. I hate that you are having to deal with things like this though your obviously one strong willed devoted Mom.

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