Our son, Seth, had brain damage at birth. This is a personal account of raising a child with additional/special needs. It may be just a cathartic process for me but I hope that it becomes more and that other parents find it helpful, through shared experiences
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Wednesday, 28 September 2011
the good, the bad and the spending cuts
Last week I had my first real experience of social services. Because I was feeling utterly crap and was struggling carrying Seth around I asked (and was given!!!!) some help on Friday. A nurse from an agency spent the afternoon with us, helping with feeding and bathing. She didn't have to do a great deal because Seth fitted and slept most of the afternoon but it still meant I could go have a bath and not worry about having to leap out if Seth woke up.
Seth is being a bit of a git at the moment. I think it's because he's just so tired by the time Craig picks him up from my parents but he just screams. He spent last week waking up several times every night so by the end of the week Craig and I were ready to snap each others heads off from tiredness. The weekend helped though - I actually spent Sunday on a go slow; doing those little tasks that never get done because you never seem to get time - and that was very satisfying. But then last night Seth just wouldn't settle and wouldn't be comforted for several hours. & then tonight again he was just sobbing. He's working so hard at school and coming home with gold stars on a regular basis and I think by the end of the day he's just completely strung out.
Northamptonshire County Council are stopping free transport for under 4 yr olds to Seth's school. Yet again I am thankful that my parents pick Seth up when I'm at work. But what about those parents who don't have that kind of support?! Already there are children that had intended joining Seth's class in September that didn't end up coming because they knew the transport wasn't going to be available from October (apparently). So those are children that are now missing out; they wouldn't have planned to come if it wasn't the best place for them. Thing is I heard about this a week or so ago so went on the council website to find out if it was true and there was nothing about it. & then 2 days ago the letters went out to parents. Nice!
Thursday, 22 September 2011
Not the best day of a crappy week
The train pulled away as I walked into the station! I'm going to London for a course, its prepaid and the train fare is paid so I'm going. I feel queasy and tired and probably could even should be off sick but when you work sitting still at a computer and you feel ok sitting still you can't help but think 'well I might as well work'! But let me explain:
I had a reaction to something I ate (or drank, I did try a shot of pocine and I wouldn't be at all surprised if my body revolted) at a lovely friends wedding Saturday night. Seth was with my parents until later on Sunday and Craig and I had the night and morning to ourselves. Only I spent 24 hours very very poorly. I have been to the doctor 3 times and been prescribed a heartening quantity of drugs.
On the plus side I should have lost a decent amount of weight as I'm still pretty much only eating crackers, although at the moment my stomach resembles a basketball. Also my family have been amazing; my parents kept Seth til Monday night and then on Tuesday when I picked up Seth from school I went round to my brother and sister-in laws and Rob took Seth off to the park so that I could sit and chill with Pip. I struggle picking up and carrying Seth around so I phoned the Children's Disabled Team yesterday. They carried out the initial assessment and had determined we needed a core assessment. It was actually a very sympathetic report although had my name wrong and had spelling and grammatical errors throughout so I had returned it to them for amends (!) Anyway I called them to see if there was any emergency help they can offer and I've now got someone to help on Friday when I pick Seth up from school until his bedtime! The system works sometimes :)
Labels:
cognitive development,
OZ,
sleep
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