I am totally desperate at the moment - just got back from the job centre and I simply do not know where to turn. Sorry this is a bit long.
My 7 year old suffers from acute chronic constipation and this is causing him to soil himself slightly - think large wet fart - multiple time a day. He has been given different medication now and on Saturday he soiled himself 17 times. His school will not change him and clean him up when he soils - if he was classed as incontinent then they would be able to get 1: 1 support but as he is not they will not do anything. He cannot go without being cleaned as he gets sore and he smells.
The consultant said his case is so severe that it could take 3-6 months for him to be fully stable and may have to take medication for life. I am completely happy with the medical care he has received.
The school has said that as this should correct itself within 3-6 months they will not start the process of getting support without an incontinence diagnosis as it would take so long he may be better before it is agreed. So currently they call me and I go and change him - yesterday it was 5 times.
So far there are no problems.
But I had to give up work a year ago because my Mum was diagnosed with cancer and she looked after my younger child - I was unhappy in my job, did not really want to put my daughter in nursery and my Mum was really ill so I decided to take time off and return when things settled. My Mum is much better now and no longer needs help.
At the job centre they have told me that now my mum is better I must start looking for work and take the first job that I am offered - I tried to explain that right now I have to change my son 5 or 6 times during the day but they have said this cannot be taken into consideration because he is not disabled so I am not a carer and he cannot be too ill as he is at school. Therefore I must spend 35 hours a week looking for work and take the first job I get offered.
Last week I had to attend a job club course - I had to leave mid morning, lunchtime and mid afternoon to change my son so they told me not to go back. The job centre have now told me I am being sanctioned for not attending for 28 days - they are booking me on again and if I do not attend I will be sanctioned for a further 3 months.
I have spoken to the school but they said they cannot help - the Head Teacher even suggested I looked at my sons diet and make sure he is eating enough fibre!!! I was so angry I have never come closer to hitting someone in my life - does she really think I would be putting my child through all this if it could be helped by buying some prunes.....I mean really!!!
The problem is I think my Job Centre advisor is thinking the same - even though I have a letter from my consultant she assumes he is not eating properly and everyone gets constipation sometimes - it is not a major problem.
All I need is some time to allow the medication to work and my son to stabilise - he is getting all the right medical help, I understand the school position on this being temporary so why can't the job centre appreciate this - I am quite happy to work in a few months and to spend this time looking but I just cannot manage it now. I do not understand why looking after my Mum was considered caring but this is not.
I am being forced to have my money stopped for months or leave my child sitting in his own s**t - I do not know what to do or where to turn. (before people ask his Dad is not in a position to help at all) My Mum is back at work and all my family work so whilst I can get people to go and change him on occasions there is no one who could do it as often as he needs.
I have worked all my life until my Mum got cancer, so do all my brothers and sisters, so did my Mum, Dad and all my Grandparents - this is the first time any of us have claimed benefits and we always thought this was a safety net for times of trouble and we get this.